Persistent uneven pulse.
Hi can anyone tell me how they feel p... - Atrial Fibrillati...
Hi can anyone tell me how they feel persistent A Fib. How do you cope with it. My pulse is all over the place. Can't get diagnosed yet?
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ETHEL103
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Hiya Ethel.
Persistant can be worse than permanent for 'feeling' the effects. Your body will adjust to permanent but persistant can make you feel right rotten.
Now then - there is good news ahead. The fact you are in persistant means treatments may work for you - I can't promise but it's likely. If your afib 'comes and go's' then med's or ablation might be on your medic's hit list.
Before I respond any further how far are you from seeing a cardio or EP ? Have you only seen your GP to date ?
Paul
Hi Paul thanks for answering. My GP was first port of call. My heart rate was 140 one morning and he invited me down for ecg. That showed possible atrial flutter. Going on for a few months now my local hospital can't see me till Oct. I then saw a private cardio a couple of times. Both ecg in his office normal. Typical lol. He was happy with me being on Verapimil and Apixaban which was OK for a while but I'm beginning to get more episodes of what I think is probably a fib as after high rate has calmed down after a couple of hours, pulse very irregular and boy can I feel it. Very debilitating and makes me very anxious. I have an echo booked at the end of this month and my private cardio will treat me in a few months time. Everything taking ages so I have ordered a Kardio thingy which I'm still waiting for. No one as yet diagnosed me and not seen my GP for weeks as I can't get an appointment. Sorry about the long read.
"Sorry about the long read"
Don't worry Ethel - no worries there.
You wrote
"now my local hospital can't see me till Oct"
Nope - don't wait that long.
You also wrote
"I have an echo booked at the end of this month and my private cardio will treat me in a few months time"
Hmmm. I didn't like to ask (I don't know your budget) but seeing a cardio privately - and you have to wait a few months ???
OK - Google other cardios's and I think you'll get in quicker.
Personally a HR of 140 I would go A&E there and then after 3 / 4 or hours or so of that.
The Kardio is a good idea - that way you can track it and have it on your tablet / computer to show your medic.
All best,
Paul
My private cardio treating me on NHS hence the wait. Forgot to add that.
Problem is also Rate Control or Rhythm Control since meds work on different issues. I had both Afib and Flutter so it’s difficult to diagnose. EKG’s are diagnosed for that given time. Are meds given on an experimental basis? Unfortunately when that is the procedure the Afib goes from persistent to permanent over a period of time. I get nervous with each day that passes while still in Afib.
Ethel - that's awful for you. I agree with Paul - push things by going to A&E with a high heart rate - even better if you can get your GP to send you. My GP called an ambulance with AF and my heart rate of 120 at diagnosis. I certainly wouln't want to wait until October.
A private appointment shouldn't be months' long waiting - it didn't help that your heart behaved normally at the ECG's but that is normal for many of us!! Mine hid completely from hospital monitors until I had a 24-hour one fitted. Once you get the echo done, you may find that an anti-arrhythmic drug or other drugs can be prescribed which may help your overall position and this may be what your private cardio is waiting for.
A Kardia is a good idea to catch those errant runs of arrhythmia and may help you to get a diagnosis.
My heart rate has been high a few times and I have had calls from GP. Going to A&E never mentioned. I guess it would speed things up but as the events happen occasionally I suspect that's why not been advised. Lots of peeps on hear say sit it out as hospitals usually keep you all day with beta blockers prescribed. I've tried 2 different kinds and it sent my HR into the low 40's. Hence now Verapimil is all I'm on. Really don't know what to do. If the highHR carried on for a few hours maybe an ambulance would be the way to go.
Yes, going to A&E with AF normally means lolling around waiting with not much happening. That's why I wondered if your GP could initiate it - mine was mid-morning and although I lolled around for 13 hours (!) i was admitted to C Care and saw a cardio the next morning. I think it was because of my GP's concern as the staff kept telling me that my 'ECG had changed'. Certainly call an ambulance if you feel unwell or have any chest pain - my GP told me to do so if I had a heart rate about 100 for more than 45mins (I think). Had I done so, I would have lived in A&E for 7 months - LOL.
Best wishes, Ethel and remember to put yourself and your medical needs first.
My paroximal AF seems to be more persistent and its very debilitating. All day every day I'm in and out of AF. I can cope with the feeling of fluttering and when my heart plays a little ditty but when its intense and I get the cha cha cha, or stamp stamp stamp kick in my chest I'm scared to move as it makes it more intense. I suspect I need stronger Diltiazem but the side effects make me feel rotten so I'm resisting. I get a lot of relief from taking and over the counter esomaprazone every morning. My stomach is much calmer and that seems to calm my AF. I like you have had shockingly bad access to NHS services and had to get everything done privately so far. But I have not waited more than 2 weeks for a private consultation. I have had 4 different cardiologists at different stages, first one I managed to speak to on the same day. Next one was within a week and I got the echo and 7 day tape done with her within a fortnight. 3rd I waited 2 weeks to see as he was on holiday, and he referred to me an EP who I spoke to within 2 days. I'm in Swindon and the first was in Kings College Hospital in london. The second was in Basingstoke and thats where the tests were done. The third was in Swindon as private services were opening up after shutting for Covid support, and the EP is in Oxford and he has put me on the NHS list for an ablation. So I think its shocking that you are having to wait so long for private consultations. I did have a 48 hour tape put on by the NHS eventually and sods law my heart behaved really well. It kicked off again 2 days late so I started taking Kardia readings and that enabled me to get a private cardiologist to refer me to an EP, but I had actually spoken to the same EP months earlier so I believe you can go directly to an EP if you want.
Where in the country are you?
Medway in Kent. I did forget to say in my original post that my private cardio which I saw twice said he would treat me on NHS If my GP referred me which he did. Our local hospital not copied with covid cases as they were overwhelmed. Hence the long wait till Oct. Actually I still have no date but the wait is 33 weeks which I concluded Oct at the earliest. I'm selp paying for private which I can't continue unfortunately.
I'm in the same situation with the self paying. I could have waited for the NHS referral to the EP who would then put me on the NHS list for ablation, but I decided not to wait on the NHS for the EP consultation so I spoke privately to an EP who worked both privately and on the NHS in the hospital I was waiting for. I waited 2 days instead of 4 months to speak to the same EP. The phone consultation only cost me £145 and it saved me 4 months of extra waiting and suffering. He put me straight on the ablation list. If you wait 33 weeks to speak to an EP and you decide to go down the ablation route, you could end up waiting 66 weeks before you get any actual treatment so I would strongly advise you to try and find an EP at the hospital you are waiting for who does private consultations. I know it feels like queue jumping but when you have a condition which is getting worse I think its totally justified. I had previously asked the NHS arrhythmia nurse if I could be referred to see about an ablation and she refused. I was later told she shouldn't have done that because I was entitled to request an ablation as I satisfied all of the criteria, so that caused me a 3 month delay. If she had done what I had asked, which was to refer me to an EP I would now be 1 month post ablation instead of sitting here with a punch up going on in my chest and a splitting headache from the surging circulation and exhausted from having had no sleep. Sometimes you really have to fight hard to get the help you need. I hope you get some relief soon.
Hurrah for the NHS system that does allow an avenue to save time: "The phone consultation only cost me £145 and it saved me 4 months of extra waiting and suffering."
We have no such system in Canada, and EP mindset is" ...like queue jumping." My heart did get totally remodelled and fibrotic having to wait 5 months just to get to an EP. (I complained or it would have been eve months) . It is mind-boggling that "I waited 2 days instead of 4 months to speak to the same EP. " I would not have to have had three ablations and counting. How wonderful that you at last have that system.
I can only hope that Canada changes its attitude towards AF. But, it is wishful thinking because I had to wait over a month to get a cardioversion , and this is after three ablations. I was told during this wait time the heart can get further remodelled.
Feel for you. Unfortunately a private cardio does cost £250plus ecg£60,and everything costs. So it is expensive for most people unless you have private medical. I'm actually still waiting to be properly diagnosed after 4 months.
it's not strictly the NHS that allows the system. It's just that a lot of the NHS consultants also have a private practice. But I'm seeing more and more which are based within a private section of an NHS hospital so the NHS receives additional revenue from these set ups. But its not really ethical as it just means that those with money can get seen quicker. In an ideal world the NHS consultants would dedicate all of their time to NHS work so the waiting time wouldn't be excessive. Consultants dividing their time between NHS and private isn't a new thing, but the NHS cashing in on it by incorporating it seems to be fairly new. I remember in 1994 my 4 year old son had enlarged adenoids and as soon as he fell asleep he would literally stop breathing and have to wake up to take a breath. He urgently needed his adenoids out but it took the NHS over a year to do it. He was so weak and exhausted and his chest was deformed from trying to breathe. Then in 1997 I elected to have my tonsils out because my snoring was bothering my new boyfriend and I was able to go private by then. I ended up seeing the same consultant within a week and he offered to do the operation the week after. I remember thinking 'you b$%£ard, if you spend more time doing NHS operations my son wouldn't have suffered so long' but on reflection its probably more about how much money the NHS was willing to pay him. My politics is that we should all have the same access to care. But when your life is unbearable and you are getting a dreadful standard of NHS care even when you can access it, which is virtually impossible, and your health is suffering, it's hard to stick to your principles and wait in the queue. Anyone who is suffering should have access to proper care, but it's not happening. It's all wrong and I don't feel good about having paid 6 different private consultants for various things in the last year, but God only knows what state I would be in if I hadn't. I have never heard of the heart remodeling. I'm now out of rhythm to varying degrees every day and I feel varying degrees of bloody awful and I feel like my heart has changed since my echo last July. I'm now wondering if that is what has happened to me. I assume they do some kind of scan before an ablation so perhaps I'll find out in July. I'm really shocked to hear health care is not great in Canada. I thought everything was superior in Canada.
Canada is superior in so many ways, but attention to AF is not one of them. There are no private AF clinics in B.C. Canada because they have been banned.
Persistent is the terminology used when you are in AF 24/7. Sometimes we have to monitor ourselves to stay on top of things. If you do not have a Kardia to take your own ECG, I would suggest investing in one or a similar device. If it turns out that you are persistent, time is of the essence, every month counts if you are going the ablation route. Then, try and get to see an EP before July. "AF begets AF," the more you have the more you will get.
Hi Ethel. So sorry you are having to go thru this. I’m a permanent afiber. Mine started 3 and 1/2 years ago. I took myself off to a and e with hr at 180. They put me on Apixaban and Adizem. Had the usual ecg etc.
I felt awful. For me because I’m permanent I stay like that 24/7 until someone intervenes. I had a cardio version first which lasted 6 weeks. Another cardioversion which lasted nearly a year. Next episode my cardiologist decided to do an ablation which unfortunately during the procedure I had a stroke. Moving forward to last November/December I was already in Afib for about 6 months when I had heart failure and fluid on the lungs. Went to my gp as I thought I had a chest infection. Gp sent me to hospital where they cardioverted me again and it was decided I have a pacemaker. I had this done 7 weeks ago with the idea of them doing an ablation to burn off the AV nodes. I went in last Wednesday for this only to be told on ‘the table’ that as my heart was ‘ticking quite nicely’ they would defer the ablation until the next time I go into Afib. I’m 72 not sure how old u r.
I do think that when yr heart rate goes higher than 140 that you should present yourself to A and E. that way you will be seen quicker by a cardiologist. Good luck.
Thankyou Sally. I'm 66.This heart thing very knew to me so I'm still at the high anxiety stage. Good to know others going through the same.
I didn't actually mean good that people are going through it lol, I just value their comments. Senior moment.
I developed Afib and flutter in January. I was placed on Sotalol. Kept getting Afib fluttering back and Cardiologist increased Sotalol. Had so many bad side effects I couldn’t function. (Low HR, Bradycardia, shortness of breath, nausea, lightheadedness, low BP, feelings of anaphylaxis, etc.). I couldn’t walk without getting out of breath. Finally went for Cardioversion and was fine for two weeks. Only 2 weeks. That’s it! Had to reduce Sotalol so now living with persistent Afib. Can’t take beta blockers so I am now trying Magnesium and Hawthorn Berry as of tomorrow. I’ll see if that helps over the next few weeks. I am on Eliquis blood thinners so it relieves the stress of a possible blood clot.
Sorry to hear that Dee I started in Feb. Can't believe you've had a CV already. Only person I ve seen is a private cardio and 2 trips were £600 so I cant keep that up. Still no proper diagnosis yet.incredibly frustrating isn't it?
This Afib situation has brought me to tears at times. I’m use to feeling well but the risk of the meds were not worth the cure. I don’t know where to turn. Seems meds can be a temporary fix for Afib so I’m trying a natural remedy for now. Will not know for a few weeks. Good luck to you!
Hi do you mind me asking what dose of Apixaban you are on.
HI, I am on Sotalol and 5 mgs. of Eliquis twice a day. I am starting to feel a little better as I taper off of Sotalol but did not get off Eliquis. I also take Amlodipine and Losartan. Too many meds for me. Trying to incorporate a natural route now. So started with Magnesium, Hawthorn Berry, Alaskan Wild Salmon oil, and Vitamin D3. On it for 5 days and feeling a little better already! Hope this works.
Hi EthelI hope you feel better! My persistent a fib responded to a cardioversion december 2019. It lasted a year and a fib is back as of 2020. Have not been cardioverted due to covid. That said, when I am in it, I feel yucky 1st 10-15 minutes of movement. I push through & then feel like I can go on & on. I notice my heart rate more if I dont stay on top of watet intake. I have pvcs and bigeminy so the verapimil and flecainide I am on helps with symptoms (they told me to stop flecainide once & symptoms were worse. I feel ok 80% of the time. Be well & hang in there!!!
ETHEL103• in reply to
Thankyou.
Hi Ethel123 I am in my 70's now but had paroxysmal AF in my 30's with some long breaks, a period of a few years clear but with a considerable amount of ectopics. In my late 50's Fib became more frequent, eventually leading to persistent. Was on Amiodarone and Apixiban for a decade and then when I was 73 (3 years ago) became permanent With an irregular HR of between 117 and 130 with Amiodarone helping to keep around 120ish. Could not get use to it hence opted for an ablation which was only partially successful altering it to flutter. 2nd ablation 6 months later was successful. However at 77 I am now getting breakthrough episodes 3 or 4 times a month - sometimes "slow AF". My mother who is 101 in July had had AF for 20 years and she says it does not bother her now and has become the "norm". I have had a long road with arrhythmia and now diagnosed with Prinzmetals. My best wishes.
TracyAdminPartner
Hello there, If you would like any support or advice, please do not hesitate to contact the Patients Services team at the A F Association via info@afa.org.uk or call our helpline 01789 867 502. Kind regards, Tracy
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