Am I talking out the back of my head?

[Frances123]

A little background.

I have had Lone Parox Afib for circa 17 years and symptomatic. Drugs are:

Flecainide 50mg twice daily since diagnosis. No known side effects except tinnitus. (24x7)

Apixaban 5mg twice daily.

Anastrazole : which kills estrogen for estrogen + breast cancer. Prescribed for 5 years.

I also take magnesium and taurine.

I do not or ever have had any known triggers for Afib. I don’t drink or smoke.

I posted re my tachy day after Christmas with brief (1-2minutes) afib. Yes, I did indulge with food over Christmas and admitted that but not big time or stupidly so. I do this every Christmas as it’s never affected me before except for putting on a couple of pounds. Either way I partly put it down to that.

All was good the next day except for some ectopics although I have felt rubbish ever since. Kardia 6L absolutely fine. No, I’m not welded to it and only use it if I feel off. My tinnitus is off the scale, thick muzzy head, brief moments of lightheadedness (seconds), headaches, tremulous etc.

Now the question. My last dose of Anastrazole was 21st December. Even though I’ve never had Flecainide side effects before could the 5 years of another toxic drug have done something to my tolerance of Flecainide now that it has been stopped? or am I barking up the wrong tree?

Many thanks to anyone who can shed some light on this. I know most of us are not medically trained but we do have years of experience. xxx

[Paulbounce]

Hi Frances.

You wrote

'Am I barking up the wrong tree'

No, I don't think you are necessary. It is possible that your stopping Anastrazole might have affected your tolerance of Flecainide, as the two drugs can have some interactions when taking them together.

I think only your doctor can really answer this. Maybe it's worth a call to your pharmacist if you can't reach your doc.

Paul

[Frances123 in reply to Paulbounce]

Thanks Paul. Will check with pharmacist. I’m lucky as my local one is so helpful and kind. Can you point me in the direction of where you saw info about the interaction please. I have tried to look before without success. Thanks.

[Paulbounce in reply to Frances123]

Hi Frances.

Yep, it's not easy to find information about the interaction between the two online. I'm taking a slightly different approach with my afib research using new search technics I have learnt for my new online business. They can be applied to any research on any topic. As you may know, I have been hit by the covid bullet - no worries but I just keep falling asleep. I have just woken up and have around 30 business emails to answer (great way to spend a Saturday evening). I need to attend to these but would also like to fully answer your question. In fact, it's worthy of a whole new thread as it would be of benefit to other forum members. I can't just explain how to do it in a few minutes but will spend a little time drafting something out later in the week. I'll try to remember to tag you when I post.

Leave it with me.

Paul

[Bagrat]

I was offered anastrozole or tamoxifen as my risk of recurrence was so low. Chose tamoxifen as am very clumsy and didn't want increased risk of osteoporosis. After a year ( with side effects from tamoxifen) did online algorhythm and discovered my 10 yr risk of dying was statistically reduced by 0.6% so it was decided by medics I could stop. Tamoxifen can also have interactions but oncologist seemed unconcerned.No I don't think you are barking up wrong tree.

I too have had increased runs of regular tachy over Christmas and since. Mostly 5-7 mins but one 30 mins. Am trying to stay off sweet treats and biscuits (!)

I developed light headedness, slight and unpredictable and just feeling rubbish some days before my flec was increased to 100 twice a day by new cardio.

That has continued but never know when it will happen.

Sorry, no answers Frances but I do think we learn to cope with our own brand of normal.

[Frances123 in reply to Bagrat]

Thank you. I wasn’t given a choice and was just prescribed it. I had dexa scan before and was found to be osteoporotic. On yearly Zometa infusion since. No chemo, just lumpectomy and radiotherapy as caught it early and small.

Never had runs of tachy before. Had 2 or 3 short one off events over last few years for about 20-30 minutes and that was it. This was virtually all day and only stopped when short bursts of AFib occurred. Have been back on my normal healthy eating since then. Never had increase of Flecainide as never needed it. Twice I took an extra one in Afib and both times it didn’t agree with me. Can take extra if hours apart but not close together. Thanks x

[Bagrat]

I think the only reason I had radiotherapy and tried tamoxifen was because I had DCIS two years before in same quadrant and they didnt know if connected or just luck!

[Frances123 in reply to Bagrat]

Sorry to hear that. I was lucky in only 8mm but also HER2+ as well as E+

[Ppiman]

This is unlikely, but do you have chronic nasal and sinus congestion by chance, possibly left over from omicron covid or a head cold last year? This can worsen tinnitus and cause a muzzy head and bring on slight dizziness if it affects the middle ear.

Steve

[Frances123 in reply to Ppiman]

Thanks Steve but all ok there. Every few months my tinnitus does get more heady and loud but usually only for a day so. Like Afib it happens on its own.

[Ppiman in reply to Frances123]

I’m never able to pin anything down either. I live with tinnitus but it’s not as bad as some get, I know. I wish I could pin things down and sometimes fear a general weakening of things! Oh to be young, I say.

Steve

[Bagrat in reply to Ppiman]

I think my biggest weakness is wanting to pin things down. If I could just accept this is my normal and stop concerning myself with why, I would be a much happier bunny!!

[Ppiman in reply to Bagrat]

I think for people who have "lone" AF, then it's sometimes easier to accept things, but I seem to get this, that and the other (lots of the other!), too, and however hard I try, the nerves jangle when my chest feels weird. The past few days have been difficult!

Steve

[Bagrat in reply to Ppiman]

Sorry to hear that Steve. I find if one ailment "plays up", everything else pops into the spotlight. I'm sure especially true of arrhythmias, ectopics etc, even if it's an unrelated prob raising its head.

[Ppiman in reply to Bagrat]

Your are spot on there. I’ve often thought underlying it all is some kind of inflammatory processes or other going on since it’s rarely one thing. Certainly the gastric and cardiac systems seem to go hand in hand.

Steve

[secondtry]

I would try a 80% reduction in sugar and probably also gluten; I find this turns down the volume of the tintitus. ...no side effects 😁

[Frances123 in reply to secondtry]

Thanks. Although it’s 24/7 I can often ignore it and not too aware of it unless I’m sitting quietly reading or something. Most of the time I eat very healthily and conscious of sugar, slat etc but thank you for the information.

[waveylines]

I was on exmastane for 7yrs.....same effect as anastrole as zeroing estrogen in my body. Recent research, release May.2022 shows that long term use ( at5yrs) affects higher functioning thinking raising query link to increased occurance to Altzeimers, linked to increase occurance of prolapse and bowel incontinence....on top of affecting bone density. The bone density can be managed. The rest of the side effects are a different case. I stopped taking Examastane June 2022, feel much better. I had a severe prolapse required an op and bowel incontinence undergoing nerve treatment. Too often such drugs are recommended without much consideration to long term effects outside the field of research eg preventing breast cancer reoccurrence Difference for me of BC occurrence was 5% when taken for years 5-10yrs. Had I known I would not have taken beyond 5yrs. Interestingly since stopping the examastane my P-Afib has hardly occurred. Am on Verapamil....mainly cos of tachycardia. That has also settled somewhat. I doubt I will be able to stop taking Verapamil but it will be interesting to see if I could take a lower dose.

So yes am sure where am concerned examstane had multiple effects on my body and may have been exacerbating my Afib.....which occurred as a Co sequence of necessary BC treatment.

[Frances123]

I was only for 5 years. Read a few papers that said 7 years was the optimum now instead of 5 and there was 0% benefit from taking it for and extra 3 after that. I was expecting to feel much better when I stopped but sadly feel worse. Let’s hope it is just a hiatus until things settle down. x

[DegTeg]

Hi Frances. I was diagnosed with paroxysmal AF five years ago and had ablation just over a year ago and my AF has returned now with a vengeance. When first diagnosed, I was put on 5mg apixaban (twice daily) and 50mg Flecanide (twice daily) . I was already taking medicines to control my hypertension. The medicine I found most difficult to tolerate was Flecanide. It seemed to suck the life out of me. It made me persistently tired. Then I was advised to take Flecanide as ‘pill in the pocket’ for AF attacks. My attacks were not any more frequent after coming off Flecanide and my tiredness was much reduced. I have had no issues with apixaban other than slight bleeding of the gums in the early days, but that settled down. Have you tried taking Flecanide as and when needed? This approach works for me . Hope you find a way out of this and wish you a happy, healthy new year.