Flecainide and Vision Problems

[Debjimmay]

My EP dr started me on 100 mg of Flecainide twice a day due to PACs and occasional Afib. I’ve been on the Flecainide for a week now and I’ve noticed in the last couple days that my vision is getting blurry and I’m getting dizzy when I turn my head a certain way. I also feel somewhat unstable on my feet sometimes. I was wondering if this could be a side effect of the Flecainide and if anyone else has had these symptoms when starting this medication. Thanks.

[meadfoot]

Yes I have had these symptoms. When I first started on flecainide originally back in 2012 I had flashing lights and other vision disturbances but they eased and disappeared.

When back on flecainide this year I had the symptoms you describe, very much off balance too. Its eased now though. Ensure you compensate being unstable on your feet by being extra careful and dont make quick movements until the symptoms ease. I also found some slight brain fog but all gone now. Best wishes.

[Debjimmay in reply to meadfoot]

Thank you so much! I wasn’t imagining it! I did call the doctor and explained what was going on and they are going to call me in the morning to let me know what to do.

[Outsidethelines]

I have used Flecainide as a Pill in the Pocket for several years, and in that time I have had a few episodes of sudden visual disturbance, with multicoloured flashing lights and the world spinning round me like a disco ball. Very dramatic, but thankfully short lived. I wouldn’t like it to happen when I’m driving, so I made the decision not to drive for 24 hours after taking the drug. I also feel that my eyesight seems generally weaker for a few days after taking it.

[Debjimmay in reply to Outsidethelines]

Yes, I felt the same way about driving. I drove anyway and when I turned my head to the right to see if there were any cars coming so I could pull out, I had the weirdest dizzy feeling. So when I came home I called the doctor and I’m waiting for them to call back today. I’m hoping they have me cut back to 50 mg of Flecainide instead of 100 mg. I really think the Flecainide is the problem.

[secondtry]

Same dose for 11 years, can't recall specific eye issue when I started but definitely felt odd for 3 months.

[Maymuna]

I also take 100mg twice a day post stroke and often feel unstable on my feet. I think I walk as if I'm slightly drunk but I'm not sure if I just feel it or whether others notice it too.I had put that down to the stroke as its one thing I don't seem to have relearnt very well, walking straight. But now you have me wondering if it could also be the Flecanide. However it's given me a much better quality of life with AF episodes going from 1 a week and lasting 24 hrs pre-stroke to note very infrequent and lasting only an hr if that. I'm happy with that so it's worth the drunken walk for now!!

[Outtheresinger]

I also felt slightly unstable and had visual problems when taking Flecanide but my Doctor said I was imagining it. Post ablation when I stopped taking Flecanide these symptoms disappeared.

[Debjimmay in reply to Outtheresinger]

I have a strong feeling my doctor is going to say I’m imagining it also. I’ve been dizzy before and off balance but this is a totally different feeling.

[Linley]

It does say on the leaflet of side effects that dizziness and vision disturbance are common but do ease off.I am on Flecainide 2 x 50mg a day and have only experienced gastric disturbances, I presume because of the lower dose.

[Snowgirl65]

Yes, I most definitely had your symptoms while on Flecainide. They would occur about an hour after taking the medication, whereby my peripheral vision would be blurry when I'd turn my eyes in either direction. It would last for about an hour -- i.e. began an hour after taking, and lasted about an hour after. I also feel -- but can't prove -- that it caused sudden cataracts. My ophthalmologist couldn't understand why I suddenly developed cataracts in both eyes at that time. I was in my mid-60s at the time. I had cataract surgery for both eyes soon after. This is just my own theory, you understand, but the coincidence was too strong that cataracts formed at the same time that Flecainide was causing blurry vision.

[Debjimmay in reply to Snowgirl65]

Thank you for sharing. I’m amazed at how many people on here have the same symptoms that I have. I have cataracts also but it seems like my vision got bad overnight. I’m also a glaucoma suspect so I hope the Flecainide does not make the glaucoma worse also. So did you stay on the Flecainide or did they adjust your dose or what happened? Just curious. I’m waiting for my doctor to call back today and let me know what they want me to do. I’m hoping they’ll let me reduce the Flecainide from 100mg twice a day to 50mg twice a day.

[Snowgirl65 in reply to Debjimmay]

I've been off Flecainide for years now after I switched EPs. I'm only on Metoprolol and Xarelto (anticoagulant) now. I hope your doctor lets you reduce the Flecainide or maybe even change to something else.

[HotGuacamole]

Absolutely!! I couldn't look to the left or right if I was walking, or look up without holding on to something. I first noticed it when I was on a treadmill, tried to look at my watch, lost my balance, fell, and was dumped out on the floor by the moving treadmill. It was a little frightening. Then I started noticing I couldn't look to the side when walking with a friend, stuff like that. I wasn't sure if it was my imagination, but next time I saw my cardiologist I mentioned it briefly - didn't really go into any detail - and said I'd sure like to try a pill-in-the-pocket regimen again. He said OK, and now I know it was the flecainide because it is gone. It was weird because the first time I was on flecainide I didn't have a problem, then went off to try pill-in-the-pocket, then back on flecainide when I had a three afib episodes in three days. I really don't want to go back on it, quite honestly, although I could if I am super careful.

[Debjimmay in reply to HotGuacamole]

I’m so sorry to hear about your accident on the treadmill. That’s terrible! I’m glad you’re ok. It’s good to know there is someone that has the same symptoms because I was beginning to think I was going crazy or just imagining it. I figured if I brought it up to the doctor, he would say the same thing. How does the PIP work? Do you only take Flecainide when you’re having an Afib attack? What happens if you don’t always know that you’re having an attack? I can sometimes tell because my heart starts skipping and flopping around. How many mg is your PIP? I’ve only been on Flecainide for a week, but I’ve noticed it’s not helping much at all with my arrhythmias. I have trigemini which means I have two normal beats and then one early beat. I have pulsatile tinnitus so I can hear whenever my heart‘s not beating normal. Sometimes that’s a pain but other times it’s good because I know when to check with my Apple Watch to see what’s going on.

It sure is nice to be able to come to this forum and ask questions and try to get answers and help. It’s really helped me a lot and I appreciate that everyone reaches out to help if they can. Please take care.

[smwdorset in reply to Debjimmay]

I only take flecanaide as a PIP as my AF comes and goes . I take 100mg first with possibility to take another 50mg if I don’t revert

I used to know if I was in AF as my heart rate went up to c 180 but now since ablation ( and after four years fee of AF) my heart rate only goes up to about 90 when I am in AF so I don’t always know . I use and Apple Watch to check if I am in AF if a notice my heartbeat which normally indicates something is awry as you don’t normally notice your own heartbeat. But sometimes it’s o ly ectopics . I have a small Kardia mobile device (12 lead) which I use to check before taking the flecanaide . I can certainly recommend that as it has saved me from taking it on a number of occasions

I am sure your EP will have a reason for putting you in flecanaide permanently but if you are unsure do ask why . Many PAF sufferers are only on blood thinners - which are essential of course especially if you can’t always tell that you are in AF

Hope this helps

But everyone is different as I say

[Debjimmay in reply to smwdorset]

Thank you for explaining how the PIP works. I did ask my EP if I could try the PIP but he said no. Like you, my Afib comes and goes. I use the Cardio Care and my Apple Watch to check. I am rarely in Afib but every time I check my Cardio Care, it says I’m having PVCs or Ectooics. Very rarely do I get a NSR reading. I am in constant Trigeminy which means my heart beats two normal beats and then one early beat. It feels like my heart is flip-flopping constantly and it’s affecting my quality of life as I have no energy or desire to do much of anything except worry about if these irregular beats are going to cause a problem with my heart. I have been on Flecainide for two weeks now and have not noticed any improvement at all in my Afib or the arrhythmias, in fact, they seem to have gotten worse. I called my EP about the vision problems, dizziness, and blurriness and the NP cut my Flecainide from 100 mg to 50 mg. It just doesn’t seem like anyone listens or understands what I’m going through. I can’t get into my EP for two months because I was told the doctors are not seeing as many patients in one day so it takes longer to get in. I am at a loss any more and very frustrated. Of course I’m sure this affects my stress levels and heart issues.

[smwdorset in reply to Debjimmay]

I suspect that the stress may be causing you more problems than the medication! Whilst I can’t understand why you are on the felcanaide permanently given you are so rarely in AF it maybe that actually the flecanaide is actually stopping you going into AF ??

I also have PVCs and Ectopics and rarely get an NSR reading but my EP is very laid back about that as in my case he says it’s simply a consequence of my valve regurgitation and won’t do me any harm

If you are unhappy about waiting that long for an appointment could you ask your GP if he can refer you elsewhere for a second opinion ? Unfortunately the cardiology service in many hospitals generally is completely overwhelmed at the moment and clinic appointments are in short supply.

I agreed to have a telephone appointment recently which was available within a month and lasted 10 mins . The secretary asked me to email recent Apple Watch and Kardia ECGs ahead of the appointment which made the consultation very focused and worthwhile and reassuring.

Is it worth asking your NP if the doctor will offer a short telephone consultation supported by your own readings? Lots of patients don’t have access to their own ECGs and often it’s the need to get an outpatient clinic slot for an ECG that holds things up I used to find.

Alternatively if your GP offers an ECG service maybe they could do a trace and give it to you to send to your EP.

The most important thing however - hard as it is to do - is to try to relax and de-stress. I have found walking and slow pool swimming very therapeutic as well as simple mindful breathing which you can learn to do online

Good luck

Sally

[Debjimmay in reply to smwdorset]

Hi Sally, it’s so kind of you to take time and reply to my message. You are correct about the stress as I do believe it aggravates my condition. I have a Kardio Care device and 90% of the time it comes up with Sinus Rhythm with Supraventricular Ectopy and about 7% of the time it comes up Afib and then the other 3% comes up sinus rhythm.

My EP had me come into the office yesterday for an EKG after being on the Flecainide for two weeks. Of course the EKG came up normal. I only got to see the NP so she is going to look over everything and then call me back to see what they want to do as the Flecainide seems to be making my arrhythmias and Afib worse.

I do have an appointment for a second opinion with an EP but I can’t get in to see her until August. I haven’t thought about a phone consultation but that’s a good idea. I will look into that.

My biggest fear is I have a moderately enlarged heart and if they can’t get my arrhythmia and Afib under control what affect will this have on my heart? My grandmother died in her 60’s of enlarged heart so this a huge concern for me.

As for bringing my EKG readings in for the EP to look over I have done that before and he just brushed it off as if it didn’t mean anything. He is not a very caring doctor. He told me that one of the side effects to Flecainide is that it can kill me but then he says if I don’t take the medication and do what he asked me to do then he won’t be able to be treat me and I will have to look for another doctor. I Came home from his office crying that day. I was so upset and confused on what I should do. This is why I am getting a second opinion.

Thanks again Sally. You seem like a very kind and understanding person. I had tried to make this as short as I could, but sometimes I just get going and can’t stop. lol

Deb

[hausjac]

yes it gave me tunnel vision and arrhythmias so I came off it. Take an old drug Disopyramide which works well for me

[smwdorset]

report this immediately

Are

You also on blood thinners

Seriously you should not be having these symptoms.

[Debjimmay in reply to smwdorset]

Yes I am on a blood thinner, Eliquis. I called my EP and reported the symptoms to his nurse practitioner 2 days ago but no one has called me back to let me know what I should do. I will try calling them today.

[Tagets]

Yes i had to come off flecanide for the same reason.i had ablation and cardioversion 4 weeks ago and have severe inflamation in my shoulders im now taking steroids for inflamation,.did anyone else suffer like this.