Over a month now since starting Sotalol. Feeling so ill ,.... brain fog and whole body just so cold. 24 degrees inside house and my body feels like I'm getting up on a winters morning without heating on. Not just extremeties but whole body.
Anyone else experience this. Got so much energy but no ability to use it.
I'm on 40mg morning and night, doses are 12 hours apart.
John
I am not on Sotalol but thought l would reply. Hope you get some advice soon. You seem to be having lots of problems with your medication of late and it’s very debilitating for you. If l felt like that, l would definitely get GP appointment in the morning or phone the AF nurse. I am very sensitive to most drugs. My doctor prescribed be digoxin last week and l had to stop it as l was living in the bathroom. I think you need to get this changed John.
Hiya Cavalierrubie,
Thanks for your comments which are pretty right. However, that said its not quite as bad as it sounds. All my medication has been stable since first diagnosed back in Jan 2010. It took from that date to August 2023 for my body to start rejecting Bisoprolol and my GP then changed me to Nebivolol ... again all OK. I did remain on this until 30 April 2024. I had also been prescribed Warfarin which again I stayed with but in November 2024 my health went down hill following an increase in pain from an arthritic left shoulder - compounded by tripping over the cat and tearing my ligament on the left shoulder rotator cuff. To deal with pain levels my GP prescribed Amtriptyline and that gave me unwelcome side effects ( diahorrea ) then she tried Gabapentin - resulted in same side effects ! Whilst she was stuffing around like this she took me off Warfarin and put me on a NOAC, Edoxaban. Stuck with this for a few months until I realised all the horror nightmares, vile, vile ones at that giving me much disturbed sleep and I told her I was coming off the rotten stuff and going back onto Warfarin !
So now ( and by the way Dr. doesn't know best - because Dr. doesn't damn well listen ) I am settling down to my original tried and proven medication regieme that I'd been on since 2010. I have long ago written off my GP and surgery practice as being good for INR consultations and repeat prescriptions only.
Then around March time 2024 I felt my heart feeling as if it was trying to kick off and I referred myself privately for a full cardiac review with a Cardiac Consultant ( of my choosing ). This I've now received with a further adjustment of beta blocker (Sotalol ) which now is in its settling down mode. Consultant doesn't want to see me till Sept/Oct 2024 ( unless anything kicks off ). I have to put the experience of my chosen Consultant ahead of the views of a youthful won't listen GP ( I guess she is early to mid 30's ).
So really, my deteriorated health is more due to circumstances ( particularly my trip/fall which did so much damage and associated pain control ) rather than cardiac issues per se. I might add that this is the first cardiac review since I was first diagnosed in East Surrey Hospital in Jan 2010. Thus far it is confirmed that my heart is in a condition consistent with age ( 80 in Sept ) and amounts to thickening of the walls of the left ventricle and the heart arteries themselves, showing some evidence of narrowing is not causing any reduced blood flow. The only other feature of my heart is that it tends to want to charge off on its own and beat to the rythmn of any drum. So far, the only thing I've noticed is that I am a little more weary than usual.
So, on balance, not a bad review result all things considered. However, this morning on my return to work after the half term break, I am handing in my notice and gonna retire ( for the second time ) ............ no point in pushing my luck. Eh ?
John
Happy retirement John. Enjoy the summer.
It is my understanding that Sotalol isn’t prescribed much in the UK due to side effects. I know some take it with no problems, but it seems that more have problems than not.
I was prescribed it probably about 10 years ago. Seemed ok at first then I noticed my vision was blurry when driving. Once I stopped it my vision returned to normal.
Sounds like you are not tolerating it well and need to change.
Enjoy your retirement.
Although I started taking Sotalol (80 mg) in 1995, so nearly 30 years ago now, I DO remember it made me feel absolutely dreadful for at least six weeks, possibly more. The doctor kept changing the medication for other beta blockers (not much choice that long ago) but then my AF surged again, so I went back to Sotalol.
All I can say is that you DO get used to the drug and although it is very 'out of date' it does work effectively for many people; but now that there are so many more cardiac specific remedies like Bisopropol and Nebivolol, which have far fewer systemic effects (or so some say) I am surprised that Sotalol has been recommended for you.
For me, it works, so I don't want to change not knowing what the impacts of newer drugs might be, on the basis of 'leave well alone when something works.'
I start on today
Just got my AF under control since the last ecg and monitor I feel but the hospital are changing my meds without seeing if my feelings are correct
My EP swears by Sotalol as the best drug for afib. I have taken it for the last 4 years x40mg x 3 per day.It has been ok with me, I do get disturbed sleep and nightmares which I am attributing to the Sotalol but carry on regardless. My only problem is that I had breakthrough episodes of AF which were very symptomatic, hence my ablation 10 weeks ago. I now hope to be able to come off it when I see my EP providing the ablation continues to work and my heart stays in rhythm
Hi John
Sorry to hear you're having a problem finding a medication which will keep your heart at a suitable rhythm.
I took Sotalol briefly as a pill in the pocket in the early days of my AF attacks. It made me feel totally spaced out for a few hours afterwards. Years later it was prescribed for me daily after an ablation but it didn't control my AF attacks, so went back on to Metoprolol and Flecainide. Flecainide was stopped a while back as the elderly cardiologist I saw said it was causing more problems than helping. I certainly feel more alive without it.
I thought you were keeping well heart wise these days after adjusting your diet? Didn't you have several years without any AF?
Why have you changed your pills from the ones that kept you well?
Jean
Hiya Jean,
Since I wrote my comments to Cavalierrubie earlier I have now received my latest letter from my Cardiac Consultant. Quite interesting particularly his road map of the progression of my AF since Jan 2010 .... he also commits in writing to the way forward in terms of treatment.
When I get my comments written and posted on here it will give you more detailled answers to your queries.
Basically though, yes I had several years with highly controlled AF and it was highly controlled with meds and diet. Then last August it started going wrong with Bisoprolol kicking off sending me off into the land of the Zombie in the village of the living dead. So it was my GP who started changing the pills I was on and it was her damn awful decision making process at Surgery level that has set me off with a constant process of change of meds.... and problems.
In the end I gave up with my surgery and went private - direct to the guy who is now my Cardiac Consultant.
Bear with me Jean ...... watch this space. 😊
John
Hi John,
I was on sotalol for 2 years, ghastly drug. It didn't stop the AF and felt puffed out on any exertion. I then went onto diltiazem which I got on much better with. If it doesn't stop the AF you might want to consider an alternative, or nothing at all if your HR doesn't get too high.
Cheers, Mark
Thanks Mark,
In todays mail I received my final letter from my Cardio Consultant. I plan to summarise it in the next day or so and the comments he makes may well be of interest. Not does he just reflect on my AF journey but provides the way forward with other different/ associated drugs.
John
I was put on Sotalol, it was like a medical cosh!
I went back to my consultant and he cancelled them and put me on flecainide......chalk and cheese!
A lot of people have problems with Sotalol, it seems to be one of the first meds they turn to but you mustn't put up with something that disagrees with you! There are alternatives.
When I was on it , I first took 80 mg twice a day and I had a hard time breathing! Took 40 twice a day and could breath better but my heart rate was still high! I take Nebivolol 5mg and feel a lot better , not dizzy and can breath and does not upset my stomach! LOVE IT!
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