Drug side effects confusing

[Renesch]

I have experienced afib a couple of times a year for about 4 years lasting about 24 hours. In early Dec i went into afib and it lated 4 days then a few days later another attack, gp put me on 120gm controlled release diltiazem, it worked for 3 days then another session, she put it up to 180gm but it didn't help and next day it was rapid and irregular 170/200bpm and I went to emergency. They added a top up of 60mg quick release when that didn't work they added 200mg of flecainide, went back into sinus rhythm and was sent home but the side edicts were awful, I couldn't walk straight, i was confused, eyesight was blurry had difficulty focusing so husband called ambulance they said I wasn't tolerating the drugs. I decided to work out the drugs for myself, i now take 180mg controlled reeked diltiazem in morning and 50mg quick release in morning. This is still controlling my heart rate but I am so tired and still wobbly on my feet and have fussy eyesight. Any suggestions or comments greatly appreciated.

[Paulbounce]

Hi Renesch.

I can't help with your meds as I'm not a doctor. However, be careful if you decide to 'take things into your own hands' and work them out for yourself. It might not be the best of ideas.

Lifestyle changes such as reducing stress, exercising regularly, and eating a healthy diet to help manage your symptoms are worthwhile. Is it worth you getting an opinion from another doctor or a cardiologist for a more thorough evaluation?

Paul

[Renesch in reply to Paulbounce]

Thank you for your reply. I was exercising 6 out of 7 days a week, just before this rapid afib happened I completed a 5 day 4 night hike, eat really healthy and don't really have any stress except managing this. However now i have no energy or motivation. Recently saw a cardiologist who is considering ablation but there is going to be a long long wait. He said he had run out of drug options and told me the max of each one I could take and to play with it until I found what worked. My biggest question really is if anyone else has had these a symptoms.

[Paulbounce in reply to Renesch]

Hi Renesch. I haven't really had those symptoms but I'm sure someone will reply who has.

Just quickly. You did a 5 day 4 night hike just before your rapid afib?????? Do you think there could be a link there? Personally moderation is the keyword for me when it comes down to exercise.

Paul

[Renesch in reply to Paulbounce]

Many Thanks Paul, the hike was 5 months before my problem. I am extremely fit, or was until this happened.

[CDreamer]

Hi - believe me I know how horrible those feelings are!

There are so many reasons for your symptoms and not tolerating the drugs is only one, but probably the most likely but one has to ask why you have not adjusted? Many people take time to adjust to meds but if you have persistent symptoms, all day, every day for more than 4 weeks - thenb time to get a thorough specialist assessment and alternative treatment.

Firstly - have you seen an EP - specialist cardiologist? If not, get a referral and a treatment plan. There are other treatments so suggest you visit the AFA website and perhaps sign up for one of the on-line courses. I can see you are in NZ and there are a few posters here form NZ so hopefully one of them will chip in and signpost you to how and where to see one, they may be thin on the ground.

Secondly - has anyone spoken to you about anticoagulants? If not please seek advice on this urgently. Your heart can and will survive many bouts of AF but your brain may not survive a stroke which is our biggest concern. Taking prophalactic dose of anticoagulants reduces that risk.

Flecainide has a relatively short half life - so your body should have cleared the chemicals if you had only one dose - but I am not clear - are you taking 200mg of Flec daily? In UK only heart specialists can prescribe this drug so are you seeing and being monitored by one if you continue to take the Flec daily? Normally one would take 100mgx2 daily as a maintenance dose but some people start on 50mgx2 daily, the minimum amount to control the arrythmia is very individual. Often a beta blocker would be added alongside Flec rather than Diltiazim but I am not a doctor, just an experienced patient from dealing with this stuff for the past 16 years or so.

Diltiazim is a calcium blocker and can cause symptoms but the ones you describe are not common, especially the blurry vision therefore the first thing I would suggest is go see a really good optometrist and get your eyes tested as a first step. Optometrists can often pick up other medical issues as well as testing your vision.

Does your sight improve with rest - ie: closing your eyes for 10 minutes - then deteriorate as soon as you focus? If you start to suffer ptosis (eyelids stay closed and won’t open or feel very heavy) try putting a cold compress on closed eye lids for about 2 mins, no longer. If they improve rapidly but then tire again within a few minutes - go to your doctor and ask for an immediate referral to a neurologist.

What happened to me was very rare but I had very similar symptoms and was eventually diagnosed with muscular neurological condition Myasthenia gravis which is worsened by these drugs. One of the defining features is blurry eyesight and inability to focus and/or ptosis which is caused by a weakness of the muscles in the eye. Does your sight improve with rest - ie: closing your eyes for 10 minutes - then deteriorate as soon as you focus?

When I was eventually diagnosed my lovely GP who had 35 years in practice had never seen a case so it’s most unlikely you also have this but forewarned is forearmed because many of the numerous doctors I consulted for diagnosis did not consider it so it took me 6 months to get a diagnosis - evidently that is quite quick and the UK average is 2 years. Know that it is easily treatable once diagnosed but like anything else, better sooner than later.

Also know that I am now well, not exactly fit but doing OK, very, very rare AF nowadays and I take absolutely no heart drugs and Myasthenia is well controlled and I am now reducing the drugs, I continue to take anticoagulants however to reduce my stroke risk.

Everyone with AF has a different journey but know that we are here to help and support and share knowledge and experience.

Very best wishes - CD.

[Renesch in reply to CDreamer]

Many thanks CD, I have been on blood thinners for 4 years and I saw the cardiologist privately a few days ago. He wants me to see an electrophysiologist so waiting on that appointment and he/she can then refer me for ablation if they deem it worthwhile. Certainly keep the other information in mind in particular the prednisone. Certainly going to look into that.

Many many thanks

[CDreamer]

AH - just read your profile - you are on pred. I had to avoid pred to treat the Mg - because it can provoke AF. It’s a horrible position to be in but you need a multi disciplined team to advise.

[Crash88]

well.. at least you have a husband to take care of you. Imagine being at 170 heart rate and all by yourself in the middle of the night.

[Renesch in reply to Crash88]

That would be really hard and scary

[Crash88 in reply to Renesch]

btw how do you manage to not panic when hitting rates so high? deep breathing? laying down? praying?

[DawnTX in reply to Crash88]

it might be nice to have someone there, but I find it wouldn’t matter if I had a room full of people helping me when you have an event, you are alone no one quite gets it if they haven’t had it and having a husband did not make her any better I’m sure. Many of us have been alone. My event I went facedown on my concrete floor, smashed my teeth etc. blacked out when I woke. I managed to get up and thought I went to bed. I found myself on the floor again in my bathroom. I had blacked out a second time and this time did get to bed and went to sleep. The fact I woke the next morning makes me very grateful, having a husband would’ve kept me from doing the stupid things I did, but other than that would’ve been no help. Sorry, but it seems like you have an edge to your post is if somehow she is guilty of something having a husband. It’s always nice to have people care about us. It doesn’t matter what the relation. If you were alone, when you had those numbers, I get it it’s scary. Just remember many of us out here go through things alone.

[Swimsyroke]

Hi ReneschMy story is a similar in some ways to yours. I have always kept fit and had paroxysmal afib for 14 years with just flecanaide as a PIP which usually converted to sinus rhythm in about 3 hrs taking 200mg. Then in September 2021 I had to increase the dose of flecanaide to 300mg and finally it stopped working all together.

When I visited A&E with a very high heart rate they did not deal with the afib but simply gave me Bisopropol to bring the heart rate down which I believe is often the way forward these days.

I was very scared to be sent home still in afib and used this site a lot for reassurance.

I came to understand that persistent afib is not to be feared.

It took over a year for me to get medical help and meanwhile I self treated with bisopropol firstly 1.25 mg every evening then increasing it to 2.5 mg. Then I changed to 2.5mg am only on the advice of my GP.

Finally in December 2022 I saw a cardio nurse who was very informative. The upshot is that I am remaining in persistent afib, am on 3.75 mg Bisopropol in the morning along with edoxaban and I feel great. I rarely notice my heart, the rate is around 73, higher if I exercise and I no longer fear having to stop my sport and find my way home because I have suddenly gone into afib.

Obviously we are all different but you need to find what works for you and don't give up until you are happy.

For me I think going into persistent afib was the best thing that happened to me as I no longer worry or get anxious over every little change in my heartbeat.

Good luck but persevere until you have a better QOL.

[Janith]

Try low dose sotalol morning and evening along with magnesium taurant mornings. No alcohol and small portions at each mealtime. Get good sleep and daily bathroom visits. Exercise daily …