Persistent AF, Diltiazem, side effects or Menopause??

[Tplongy]

I apologise in advance for what will be quite a lengthy post....

I was diagnosed with persistent a year ago Oct 22, but likely I had it unknowingly for about 2 years prior and put breathlessness and tiredness to work/being unfit. I am 57. During that 12 months I was on Bisoprolol for 9 months and (blood thinners - subsequently stopped by cardiologist). Bisoprolol did not agree with me at all, debilitating fatigue, dizziness, still breathless, very low BP - varying attempts at lowering or raising dosage, changing dose times made no difference.

Cardiologist subsequently changed me to CCB in the form of Diltiazem of 90 mg twice a day in June this year after my 2nd failed CV (5 hrs in NSR before AF returned).

For 3 months seemed better, BP returned to much better levels (avg 100-110 over 70 ish), and I had been feeling less fatigued and dizzy.

However in September just gradually felt worse and worse with the dizziness and light headedness making life pretty intolerable, combined with regular bad headaches (which I never had before). 24 hr ECG said BPM was between 85 and 170, avg of 113. I had assumed the 170 was during half an hour exercise stint, but Cardiologist said one reading of 170 was first thing in the morning after I got up! I have advised her on many occasions I feel dreadful in a morning (ever since being diagnosed and being on tablets) and takes me a good 1.5 hr to feel semi human.

Full comprehensive set of bloods taken and results were all fine and no other source for my symptoms found, so therefore my dose of Diltiazem was increased to 120 mg x 2 a day, with poss of increasing again to 180 mg twice if that did not work.

At my last call with her (1 hour) my cardiologist (who is very lovely btw) - arranged for another echocardiogram as my last one was a year ago (I have no other co-morbidites and my heart was all clear last year)... not yet had those results. But she is also arranging for me to take an adrenal urinary test just in case, so she is being pretty thorough.

Sorry for waffling on so, but just give the above for a bit of background. My cardiologist is now thinking that all my symptoms cannot be put down to AF and asked me lots of questions about the menopause. My doctor advised me about 17 months ago not happy giving me HRT due to my mothers breast cancer at about 48, so was unable to take it.

Put menopause symptoms side by side of medications and AF symptoms and you get a lot of commonality. She has asked me to revisit all the current medical thinking about the link between the two and consider seeing Dr about HRT. I have experienced no significant menopausal symptoms than those intermittently had for some while .....but she seems to think these could be at the root of my latest problems?

My (very long winded) question therefore - do any ladies on the forum who have persistent AF had their symptoms linked to the menopause. At the moment I feel I have no life as I feel consistently shattered, wobbly, blah blah - this despite having no other medical conditions, pushing through and exercising (sensibly), but I unable to re commit to work whilst I feel like this.

Any thoughts anyone please?

Many thanks.🙂

[mjames1]

If you're not already seeing an electrophysiologist (ep) , you should be. Your situation is way above the pay grade of a cardiologist.

Not saying anything about menopause/afib, one way or the other, but your afib situation has to be addressed properly and it doesn't seem like it has.

Jim

[Tplongy in reply to mjames1]

Yes saw EP in June, due to see him again in December, he added nothing of any value

[Ossie7]

Morning Tplongy , I was 52 when diagnosed ( 58 now ) and my first episode caught on ECG when I mentioned my irregular pulse and palpitations to the GP during a pre menopause check . However , I was pretty much symptom free menopause wise .

Apart from the rate control has the cardiologist tried you on any form of rhythm control medication ? I would think that you need to see an EP ( maybe pay privately for first initial consultation , as I did and many others on this forum have ) , and discuss options of improving your quality of life and hopefully getting you back in sinus rhythm . On my 2nd cardioversion I took the dreaded amiodarone on the cardiologists advice and it did work for a good 12 months . I have since had 2 ablations and just had another 12 months in lovely sinus rhythm , all be it on dronedarone . Like you , when I go into AF it is persistent and very symptomatic . Good luck and PM me should you need any more detail . Regards Amanda

[Tplongy in reply to Ossie7]

Sorry, post was long enough as it was - Yes I was on Flecainide from Feb this year to June after my 2nd cardio version - Cardiologist advised me to stop taking it a couple of weeks ago as doing absolutely nothing for my rhythm control.

With my AF basically being likely entrenched - cardio-versions seem to be a waste of time.

I already stumped up thousands last October to fastback my , scans, Cardio version (which failed) so am afraid paying to see another EP is not possible right now- the next appt with EP in Dec/Jan time will be discussing alternative options.

Thanks Amanda.

[Teresa156]

Hi Tplongy,

I’m 57 too and on HRT, but I’m not persistent AF. Still paroxysmal.

From what I’ve read on line and heard, there is no increased risk of taking HRT if there is a history of breast cancer in the family and your cardiologist is correct in that. If you do a search about that on line, there are many well known organisations that make that clear.

Unfortunately, there are many GPs who still are very cautious about HRT and they’re basing that on the old information and studies from about 40 years ago. There is a lot of info on line about it as you probably know. A lot of GPs also know very little still about HRT, it’s not something that many pay a lot of attention to sadly.

Menopause symptoms are very wide ranging and can involve headaches, breathlessness and palpitations, right through to Anxiety, insomnia and hot flushes and a lot more. For me personally I never suffered from hot flushes, but anxiety and insomnia were my main ones and caused me to take early retirement two years ago. I wish I’d known it was the menopause back then.

Regarding headaches, I used to get a lot of headaches due to not drinking enough water. When I made sure I drank more water, they did improve drastically and don’t get any now unless I’m ill ( thought I’d better mention it, just in case ).

Menopause symptoms can get worse gradually over time and then peak and this could possibly explain why it’s been bad since September,

When you went to your GP and asked about HRT previously, were you suffering what you thought were menopause symptoms?

If you do decide to ask your GP again about HRT…I do advise seeking out perhaps another GP at the practice?

[Tplongy in reply to Teresa156]

Hi Teresa

Thank you for your reply... yes saw doc due to menopause symptoms (been experiencing them for some time) - (she has since left the practice). Have researched and read/viewed videos and articles to set my mind at rest ref HRT/Breast cancer issue ... I guess my issue is that I basically cannot really believe that the dizziness I experience can be down to the menopause, but I could be totally wrong, having obviously never taken anything for it..

So sorry you had to retire because of the menopause, who'd be a woman eh?

I drink gallons of water so the headaches are defo not linked to dehydration, but it was worth mentioning thank you.👍

[Teresa156 in reply to Tplongy]

Hi Tplongy,

Yes, retiring early wasn’t part of my plan 😳 though it is quite pleasant!

To be really honest with you, I don’t think everything you are experiencing is due to the menopause either. I would think it was your Afib, the medication, or both causing a majority of what you are experiencing.

I notice you saw an EP in June and seeing one in December, but your symptoms are worse now so perhaps the outcome at that appointment might be different this time? Really tell them how bad you are feeling and how your quality of life is greatly affected. Have you been offered an ablation.? Would you have one?

[Auriculaire in reply to Tplongy]

It should be your decision as to whether you go on HRT or not. As others have said the doctor is out of date. You should say that you want a trial of HRT to see if that improves your symptoms. And try to get transdermal bioidentical hormones as they are safer.

[Tplongy in reply to Auriculaire]

Thanks Auriculaire, there isn’t an issue with anyone making me take HRT, on the contrary I wanted to take it but it was ruled out by my GP, was my cardiologist who suggested I revisit it… noted your comment on bioidentical hormones…👍

[Tplongy]

Yes, I too don’t think these are menopause symptoms either …

EP put me on list for ablation but said low chance of success.. no other health issues other than overweight.., so I have now lost 1.5 stones and on course to lose rest by Feb…so at least that can be ruled out as a reason for low chance of success..

Glad retirement is working well for you at least 👏

[Teresa156]

Well done on your weight loss, all that certainly helps.

I wonder if you will see a different EP in December…it could be likely, as often they change regularly 🤞 If that is the case, it could be a different opinion next time as they all have very different views.

There is also another option if they do say that ablation is off the cards and that is a mini maze procedure which has an excellent success rate and one of the reasons they do those, is when all else fails. If you do a search in posts you will see a few posts on it. It’s carried out in the US and Japan and there is one hospital that does it now in the UK under the NHS now ( I forget which one ). Mummyluv is one of the members on this forum who had it successfully done last year under BUPA and she is a wealth of info on it.

Hopefully more NHS hospitals will carry this out in the future. Never give up hope, there is always something that can be done that will help you.

Good luck. Please let us know how you get on.

x

[Tplongy in reply to Teresa156]

Thanks Theresa, I have seen Mummylovs post and her recommendations about Mr Hunter who is at Northern Gen Hosp where I go.

My EP discussed all options, ablation, pace and ablate… he said they didn’t do mini maze in Northern General. I actually hope I do see another EP..

Many thx for your support and kind words x

[Teresa156 in reply to Tplongy]

I hope you do see another EP…it sounds like the one you last saw, might have been having a bad day 😳

Good luck x

[Tplongy in reply to Teresa156]

Yeah he was a bit dismissive.. MadScientists post below gives me hope 🤞😉

[Teresa156 in reply to Tplongy]

Yes, I wouldn’t disregard the menopause as it’s certainly doesn’t help… it certainly won’t hurt to give it a try and see if it helps you? if it’s any help Tplongy, it took about 3 months for me to feel better, but finding the right HRT can sometimes be a challenge, it was for me. Everyone reacts differently to different types and there are many.

I get on really well now with Lenzetto spray ( which is one of the newest forms of oestrogen HRT) and a Mirena coil for progesterone. Anxiety and insomnia drastically improved very quickly for me, once I got the HRT right. It is most definitely worth trying HRT and insisting if there is push back.

I would recommend gel, spray or patch for the estrogen element Tplongy, as that contains natural estrogen ( estradiol) as the oral pill contains synthetic estrogen. Nothing wrong with that, as it’s just as effective, GPs tend to give that initially as it is cheaper, but for me personally I wanted the ‘body identical’ estradiol.

[Madscientist16]

Not sure this is the answer you are looking for, but my menopause symptoms made my AF worse. Being on HRT has improve my quality of life immensely. I am currently 57 but was in menopause at the time of my AF diagnosis at 51.

[Tplongy]

thanks Madscientist, that’s really helpful to know…when did you start taking HRT and how long did it take for you to see improvements if you don’t mind my asking? Also was this in pill, gel or patch form? And is your AF persistent? Sorry for the questions, it this is really helpful to know👍

Thanks again

[Hidden]

I was on hrt for over 30 yrs happily till2021 when I had an early breast cancer and had to stop. I had had an episode of AF in 2017 and been on beta blockers and thinners since then. I don’t seem to be able to link any symptoms to the AF, so can’t make a comment but hrt is great, gives you the energy to do what you want- the fact the yr mum had BC is irrelevant as you would be monitored anyway. At least give the hrt a try!

[Tplongy in reply to Hidden]

Thx needle, I have no issues in taking HRT it was the Dr who would not prescribe for me.