Alternate days of AF.... sotalol & exhaustion

[1ynno]

Hi everyone, I am so delighted to have found this forum as I have felt very alone since mid January when my paroximal AF decided to take over my life! After a few episodes of 'irregular heart rate ' 8 yrs ago ( one diagnosed as AF another as SVT, the others undecided) I have managed on 40mg of sotalol twice, then once daily, ever since, with only one or two brief 'episodes' a year. This NY I decided it was time to take charge of my life(!) & loosing weight would be a good start. A week after commencing the Keto diet, I accidentally became dehydrated ( combination of adjustment to ketosis, and an extremely hot spell) since then my heart has gone feral!!! Multiple trips to A&E, IV fluids & electrolytes, overnight monitoring, & increases in meds. It is exactly a month since my first 12hr episode with pulse flitting from 80s-170s & after finally finding a Dr who explained things to me, I have given up on my trips to A&E. I'm now on 240mg sotalol, + rivaroxaban + 62.5 digoxin, & unsurprisingly feeling EXHAUSTED 99%of the time. My alternate daily episodes are overall shorter and slower than before, but STILL totally irregular & unpredictable. I have another 9 days to wait until I see the electrocardio consultant again, & am very fearful that he will start me on flecatide(?) which will prevent me ever enjoying a glass of wine again, as well as other restrictions that I don't want to contemplate at the age of 57!

Has anyone else felt this Exhausted on sotalol? According to the pharmacist my body should have adjusted well before now, but I could still spend all day and night sleeping! Am I just being 'lazy'? Could it be the 4+hrs of PAfib? I have been assured by 3 separate cardiologists that my diet is NOT a contributing factor & that I need to just wait while my body 'adjusts' ....... seems to me, that my rogue electrical system is 'settling in for good' whist the meds are just allowing it to establish & knock me off my feet!

[CDreamer]

Hi and welcome - i am assuming you are not in the UK - a temperatures are around freezing here.

Sotolol is no longer recommended for Lone AF in the UK. Personally I would rather take Flecainide than Sotolol so I am wondering why are you so fearful?

Dehydration would certainly be a trigger for AF episodes.

May I suggest that you go to the AFA website and take the patient - resources tab and read all the information there about various treatment options so that you can compose a list of questions before your EP appointment.

Best wishes

[1ynno in reply to CDreamer]

Thankyou CDreamer, I was originally on metoprolol but still having repeated bouts of irregular rhythm, sotalol settled it down to the annual/biannual events that were managed with PIP of more sotalol ( although I'm uncertain if it was the med, or just coincidental as it was never to help ).

I now live in Australia & its mid summer.

Flecanide looks scary in what I have read ie: first 2 days for observation in hospital, dietary restrictions, sun restrictions and most importantly as someone who lives in a 'wine region' of Aus, where a glass of wine or two is very important to the social culture, abstinence of alcohol. I don't want to sound stupid, cos obviously I would rather be teetotal than dead, & I obviously can't function in my present state, but as there are plenty of other medication possibilities out there, I would rather avoid that particular one until all other options are explored. All but one of the Drs I have encountered over the past month have instantly stated ' start flecanide' but I'm sticking with the lone wolf who said there were possible alternatives.

Having said all of this, I do acknowledge that health advice can vary in different countries, so thankyou for your advice I will check out the AFA website..... next time I have the energy 😉

Best wishes

Lynn

[Hidden in reply to 1ynno]

Hi Lynn,

Can't help you with any medical advice just to say though, in case you were unaware that AFA have a Facebook Group .......... Atrial Fibrillation Australia. That may help you to identify with local (to Aus) experiences maybe enable you to get exposure to local sufferers approach to AF.

Commisserations on the 'no wine' diet. Now that would upset me. I know several winegrowing areas from my days in Aus - Yarra Valley, Victoria, the Hunter Valley and the Milawa area of northern Victoria.

By the way - you are unlikely to die from AF - it may seem like that at times particularly with the 'no wine' diet Its the total destruction of your lifestyle that's the problem. Food has been my problem - that can trigger AF in a wink. Oddly, alcohol and caffeine have no effect on me at all - except for English real ales - the gluten, wheat and additives in those beers upset my gut.

Good luck,

John

[1ynno in reply to Hidden]

Thankyou John

[Hidden in reply to 1ynno]

Hi Lynn, Welcome. I belong to 2 forums-restless leg syndrome and atrial fibrillation. Stick with us. There are so many informative posts. When I first joined I would just browse around reading as many posts as I could and learned so much. Especially what to ask my doc about. The most important thing for me in the beginning was learning that afib is very much 'trial and error' in the beginning-finding out what works for you. Im 73-a retired nurse and have had afib since 2011. I am now well-managed and living very comfortably with afib. I see it as a chronic illness that I will have to pay attention to for the rest of my life. But it isn't as scary as it seems in the beginning. As you read the posts you'll find lots of us who have been around for quite awhile living with afib. And I for one plan to be around a lot longer. Trial and error in the beginning-with meds- is hard but will smooth out as you and your doc find what meds/treatments work for you. Life is very comfortable for me and I hope it won't be too long before you feel this way too. Take care. irina1975

[1ynno in reply to Hidden]

Thankyou Irina

[mikeymike7]

You need to be assessed by the EP in the first instance. I have been on variously, amiodarone, bisoprolol, flecainide and sotalol. Flecainide worked for a year but since my cryoablation, I have been AF free for three years. Still get ectopics now and then but far better than days in AF with HR fluctuating between 90 and 150. Used to drink 8 - 10 pints a week but it was an obvious trigger and haven't touched a drop in 4 years. I do miss it but I'm now used to Beck's Blue as an alternative! Also drug free so no side effects.

[1ynno in reply to mikeymike7]

Thankyou

[sleeksheep]

I was on Sotalol for years and never adjusted to the slight nausea and exhaustion it produced. With Flecanide it took a few weeks of adjustment and since then I've felt normal.

I,m in Australia and can still drink wine with no afib problems.

I did,nt spend any time in hospital for the change over from sotalol just had to have a 48hr break between them.

I dont have any side effects from Flecanide ( besides statin incompatibility ) and the stated side effects from Sotalol are probably worse. You wont know untill your been on it for a month or so. Anything is better than sotalol IMO.

[Redders in reply to sleeksheep]

So flecainide is not compatible with statins ? I didn’t know that, could that be the reason I’m in af I wonder

[sleeksheep in reply to Redders]

Its not incompatible but creates in some people ( myself ) the muscle pain.

I should have said my statin / flecainide compatibility - it affects everyone differently.

Never had muscle pain with sotalol but it was a far worse drug IMO.

[pottypete1 in reply to Redders]

This cannot be true of everyone as I took statins most of last year and Flecainide without any issues

Pete

[1ynno in reply to sleeksheep]

Thankyou

[pottypete1]

I was on Sotalol for the first year or so after AF was diagnosed many years ago and felt awful and had similar symptoms to you.

I have been on Flecainide for over 20 years now and drank alcohol moderately until 2 years ago. PAF continued throughout.

Although there was no obvious connection between my AF and alcohol I stopped drinking nearly 2 years ago. I felt I should do all I could to help the EP who carried out my 5th, 6th & 7th ablations.

Although I see no reason why you should not have the occasional glass of wine if taking Flecainide believe me being teetotal is not the end of the world.

I still take Flecainide each day with no obvious side effects but apart from Ectopics I have been in normal rhythm since August last year.

Pete

[1ynno in reply to pottypete1]

Thankyou

[jennydog]

I have taken Soltalol, Amiodarone Atenalol and Flecainide at different times over the past 6 years. I consider flecainide to be the best of the lot. I now use it as a pill-in- the-pocket. It works, it gives me the confidence that I am in control. And it's none addictive and inexpensive.

[1ynno in reply to jennydog]

Thankyou

[doodle68]

Hi 1ynno I| hope you don't mind my asking a question in your thread concerning something you said ...

[Quote = 1ynno ''Flecainide looks scary in what I have read ie: first 2 days for observation in hospital,'']

Does anyone know if Flecainide is prescribed as a PIP in the UK does it require spending two days in hospital.

[irene75359 in reply to doodle68]

I was prescribed flecainide with no observation and just instructions to call if I had any unwanted side effects. I didn't

[jennydog in reply to doodle68]

I was originally prescribed 2x50 flecainide daily and then went up to 2x100 daily. All this was pre-ablation. There was no hospital stay and no warnings about potential difficulties. It has never caused me any problems. My treatment is at the Liverpool Heart & Chest Hospital, Liverpool, UK.

[1ynno in reply to jennydog]

Thankyou Jenny

[pottypete1]

Never heard of it myself. I started taking it many years ago so cannot remember but I am pretty sure this was not the case.

Pete

[doodle68]

..thank you Irene, jenny and pete that is reassuring .

[Janith]

I have had two episodes of PAfib within one year ... I, too, am on Sotalol ... but a very very tiny dosage of it ... I also take another blood pressure medication. I feel great! I can't believe that I have Afib ... but I do. However, my two episodes were DEFINITELY triggered by food and alcohol. I am very skinny but I must watch very carefully what I consume. I do have a very weak G & T on occasion and that's it. I have completely lost my desire for wine. Such a trigger for me. My advise to you would be the following ... take magnesium taurent (sp?) ... stop drinking wine ... lose significant weight ... WATCH YOUR DIET with a vengeance ... eat very small portions more frequently rather than one large meal ... EXERCISE daily ... study and read about vitamins appropriate for our condition ... take probiotics ...

These are the things that I do PLUS MORE and I feel full of energy, happy and less fearful as time goes by.

I wish you luck, but you must toughen up and do without all that you love. The things that you love so much, do not love you so much!!!

[1ynno in reply to Janith]

Thankyou

[dave1950]

My personal experience of this forum is that it is good for some empathy but almost everybody's experience of AF is so different and they are on different cocktails of drugs, different treatments, often Country dependent and lots of conflicting advice from experts and non-experts alike! So in the end you have to work it out yourself.

My case is that I get frequent PAF, say once a week for 48 hours. Heart rate only goes up from 50 to about 80-90 for a couple of hours then just works in fits and starts for 36-48hrs before going back to normal. Basically I was scared at first when diagnosed 2 years ago but now I basically ignore it as it has little actual effect on me apart from being a bit unnerving at night as I can hear my pulse in my ear when it is quiet!. I tried bisoprolol which did nothing other than make me a bit out of breath and I am now on 2x 40mg of Soltalol which also does nothing but no side effects. I take Apixaban as anti-coag with zero side effects so if it doesn't get worse I guess I am relatively lucky.

[1ynno in reply to dave1950]

Thankyou

[1ynno]

Thankyou to all of you for your opinions, experiences,advice and support .... much to think about.