Ocular Migraine/ Kaleidoscope Vision after an Ablation?

[Diddyd]

Just wondered if anyone has experienced this after an ablation?

I have just had a node ablation as an emergency after first one failed 2 weeks ago as I became so sick. It was not a straight forward journey and has been grim at times but on mapping my heart they found that I have unusual physiology and position of my heart which has made it technically challenging. This latest ablation involved having to do a transept puncture.

Today- 2 days later- on my way home in the car, the vision in my left eye began to change to a kaleidoscope and I could see nothing clearly. The right eye remained clear. It lasted 10 mins then slowly moved downwards in my vision enabling me to see again.

Has anyone experienced this after an ablation and was it a one off that did not require any further medical intervention?

I rang the ward and they just said they had never heard of this being linked to the heart and I just needed to drink more water as I was probably dehydrated. Any further problem to call 111.

[Buffafly]

If you read the ‘Ablation’ fact sheet you’ll see that this is common and will probably recur for some time. It is something to do with the transeptual puncture. I was in the supermarket when the shelving began to disappear! It is amazing that hospitals have never heard of this but that seems common as well.

I hope everything goes better for you after this 💜

[Buffafly in reply to Buffafly]

PS Just read your question again and as you say it only affected one eye I would see an optician if it happens again. I assume you covered one eye then the other?

[Diddyd in reply to Buffafly]

Yes I did and was very intrigued by the whole thing. I did read the info sheet but was not sure if it was this that it was describing and how people had dealt with it ie just ignored as part of the healing process or needed to get investigated. Thanks for your reply I am very grateful to be able to connect with people through here as otherwise you would worry your self sick or think you were going mad as you don’t seem to be able to ask questions of the medics. You don’t seem to have the same level of care at the moment from the support/check up side of things.

[Buffafly in reply to Diddyd]

I can barely remember what my GP looks like 🙄 I wonder if we are being subtly trained ‘not to bother the doctor’. I had an episode of passing what DrGoogle told me was probably a tiny kidney stone but just got to hand in a sample and fill in a form in the waiting room, no follow up. My husband (85) on the other hand has been called in more than once to the health centre for minor health checks - he clearly has a very conscientious GP.

[Diddyd in reply to Buffafly]

Hopefully things will improve but I had noticed a number of adverts appearing for private GP consultations. Wonder if it is sneaky privatisation/ 2 tiered healthcare system appearing. Hope you get sorted soon and am glad that at least one of you gets regular GP contact x

[BobD Volunteer]

heartrhythmalliance.org/res... explains this. Few doctors seem to know this.

[Diddyd in reply to BobD]

I am amazed at how little doctors know about some things compared to those who have walked this path! You’d have thought they would have picked up on commonalities in their patients.

[BobD Volunteer in reply to Diddyd]

Took me a long time to find out why when I wrote the sheets. Gave a load to the arrhythmia nurse at Royal Brompton when last I was there but don't know if she uses them and hands them out.

[Diddyd in reply to BobD]

I can believe it took ages. I have hunted around for all sorts and it’s like looking for a needle in a haystack. A big thank you personally from me for your efforts. It is truly appreciated. I am sure many others on here would say the same.

[jeanjeannie50]

Yes, I had it after an ablation. It's quite common then.

[opal11uk]

I have been the usual journey with A/F and had an ablation which didnt work, 4 years ago, and have episodes of crystal vision, one eye usually and after many consultations for TIA etc., have been put on Statins and pleased to say since starting them had no more episodes, however in 2000, before ever thinking of an ablation, this vision disturbance was the precursor to having a stroke, a blood clot behind the eye etc.etc., so you should always seek medical advice. What I did get after the ablation was what I refer to as 'white outs' a heat coming up from below and coursing through my body and could see nothing but white, likened to a blackout, as a consequence of these most frightening episodes I was fitted with a Pacemaker, so things do go on, sometimes unexplained, but ALWAYS see medical advice. It was a stroke doctor that recommended the Statins and of course I am on anticoags to prevent further strokes. Good luck x

[dedeottie in reply to opal11uk]

I can agree with this. After my ablation I had the ocular migraine for a couple of weeks as a result of transeptal puncture. However prior to my diagnosis I also had what I thought was migraine but only in one eye, I then had what turned out to be be 3 TIAs after each I had the migraine like symptoms again also lost speech and thought processes haywire. At A and E sent home with diagnosis of migraine. My own GP wasn’t happy and sent me to a stroke consultant who diagnosed TIA and AF. So, in your case it does sound like post ablation migraine but I would be cautious especially if only in one eye. X

[opal11uk in reply to dedeottie]

I was the same as you, they didnt know whether they were migraines or TIA's, I also lost speech, spoke total rubbish, I knew what I was wanting to say but thats not what came out of my mouth, frightening to say the lease, although it used to make me laugh so guess that was my safety valve. Stroke doctor was far more aware and competent with this thank goodness.

[Buffafly in reply to opal11uk]

I looked this up again to be sure I was giving good advice and apparently the test is whether you get a headache or other symptoms afterwards, if it all happens at once that is a sign of a TIA.

[Diddyd in reply to Buffafly]

Thanks. I just lost vision but no headache or other symptoms came on so hoping it was procedure related. Annoyingly ( from the point of view oh no what now, I’ve had enough of this) only the day before they thought I had a bleed on the brain after the procedure and sent me for CT scan which was clear and that was only the day before. Was dreading going back to go through it all again when I’d not even made it home from discharge. But glad they were on the ball for this.

[opal11uk in reply to Buffafly]

I would get a pain left hand side of my head followed by the crystal vision and speech loss, medics treated as TIA's with CAT scans and the last one said it sounded more like migraine, which I have never had in my lifetime, so now I dont know what to think however since Statins it hasn't happened again thankfully......I gave up driving because of this as frightened it would happen and I wouldn't know where the heck I was!!!!!

[Diddyd in reply to opal11uk]

Pleased to hear it has not happened again. I agree with you about feeling nervous for driving. I have not driven in a year just in case I had syncope with my AFib. Guess I will continue to use husband as my taxi driver for now. Fortunately he does not mind and I don’t go very far

[BobD Volunteer in reply to Buffafly]

Sorry no. Aura only in most cases post ablation.

[Diddyd in reply to opal11uk]

Thanks. I am nervous about stroke/TIAs as I initially had no anticoagulants due to low CHADS score and had a series of them when I started with A Fib. Then got put on them. Had break from A Fib for 8 months but Fleccainide dropped rate to 30sbpm so stopped that and heart has gone crazy. Have had continuous rates of above 130bpm for 9 months; developed heart failure; 8 admissions to hospital including a week over Christmas and on maximum drug doses. No effect. CRT-p device fitted March this year but not switched on. 12 weeks later node abalation which failed. Then 10 days later I collapsed and had to be blue lighted to hospital and have node ablation repeated as emergency. It has been a very difficult ride. At all times I have been high priority for next stage and should not have had to wait very long in normal times but because of COVID there were delays. 4 weeks becomes 12 weeks and urgent call back became 10+days and a collapse that needed urgent care.

I understand that there are many people waiting and I am happy to wait my turn as long as I am safe. But what has driven me mad is the contradictary advice I have been given along the way such as ring me if you feel unwell and I will do you as an emergency from the consultant but when you ring you get passed around and end up back at the arrhythmia nurses who tell me I am lucky I have not got to wait 12 months like some people; tough it out and other phrases that can feel unkind when you feel so ill. I am very resilient and only ring if I am desperate and cannot take any more. So this bit of care and support has been a real let down.

Interestingly there was a thread on here that had similar comments and it was the same hospital.

Once you get there, the surgical care is amazing. I am very thankful for our NHS but hope that from this point on I can have a break from their care and just heal.

[opal11uk in reply to Diddyd]

I really feel for you, its awful when you are feeling so unwell and you can't see it coming to an end in the near future however I have to say that since having a Pacemaker fitted 4 years ago my A/F is a thing of the past, although still controlled with drugs and anticoags which is the downside and now taking the Statins I haven't experienced any more vision and speech problems and feel so much better for it. I have had A/F since my 50's and now so happy to be comfortable and controlled at 77. Good luck, I hope you get sorted out soon x

[Diddyd in reply to opal11uk]

That’s so great to hear. I am only 51 ( haha, in another forum I’d be wording that different as being old!) I can not feel my heart beating at all now and it is a steady 90/50bpm all the time which is refreshing. Also I get to stop all my drugs except DOACs so that’s a win for starters. Looking forward to leading a more normal life in the near future

[dedeottie in reply to Diddyd]

Hi there. What a terrible time you have had! I am in a similar position in that I need a pacemaker and a v node ablation and am on the list for this being told it will be 3 to 5 months ( oh yeah?!) following my latest AF with syncope etc I have ended up stuck in Tachycardia at 130bpm and arrhythmia nurse says to leave it a few days then go to A and E. ( I am not sure what for). Anyway, as your Name looks to be a welsh spelling I wondered if you are in Wales. I am in the Vale of Glamorgan . X

[Diddyd in reply to dedeottie]

Oh, I feel for you. The one thing I can say is that every single professional may tell you something slightly different in terms of waiting or plan of what to do. They may do a cardioversion to get the HR down even for a short time to get you to the pace and ablate date. Or try new medication/doses.

If at all worried or get new symptoms like chest pains; do go straight to AandE. I got more help from the right people then like cardiologist who only can prescribe certain medication/procedures. I wished I had not listened to the arrythmia nurses to keep toughing it out and stay at home. ( if they knew me, I only ring if desperate and in need of help) Maybe I would not have been quite so poorly.

This forum has been great for support and help along the way when it has felt a very long and lonely journey. Use it.

I wish you the very best and a quick road to treatment. Please feel free to contact me direct if you want to ask anything about the experience of pace and ablate. I am in very very early stages but happy to support. I know it was difficult to connect with many who had had the full procedure as many feel well and leave the forums. What I can say is that those who I did find were extremely positive and it had changed their lives for the good. Take care x

[Diddyd in reply to dedeottie]

Sorry forgot to say my name is just a nickname from Diddy being small. I live in Yorkshire x

[dedeottie in reply to Diddyd]

Ah, Gods own country then! I am a Lancashire lass and moved to Wales 10 years ago. X

[Sfhmgusa]

It happens regularly to me after my two ablations , it is annoying but goes away after 20/30 mins for me. And as a worrier … this is one thing that doesn’t worry me !

But an eye test can do no harm if you are concerned and will rule out anything nasty that you might have in the back of your mind

Steve

[Diddyd in reply to Sfhmgusa]

Was thinking about doing this.

[Diddyd in reply to Diddyd]

Was unsure but after your comments I will,probably book eye health check as had a few issues with morning sight when my fluid was high which then would resolve. Can’t do any harm to check all ok. Thanks

[stoneyrosed]

I had an ablation in March this year , after a couple of days I too had the kaleidoscope in one eye, stopped after 20 mins and not had anymore.

[Diddyd in reply to stoneyrosed]

That’s good to hear. 🤞🏻It does not return.

[TracyAdmin Partner]

Hello Diddyd, it is not uncommon to experience some vision disturbance in the first few weeks post procedure, you may find our 'Recovering from Ablation for AF' Factsheet helpful from our online Patient Resources on the AF Association. Take care, Tracy

[Diddyd in reply to TracyAdmin]

Thanks, Tracy

[Lizty]

Yes,,, happened to me after my ablation. It was quite scary, but evidently it is quite common. I was fine after a few days....

[quanglewangle]

The visual disturbance labelled Ocular Migraine can be a symptom associated with Migraine headaches and also Atrial Fibrillation. In the latter case it is not necessarily associated with ablation procedure ( I experience this occasionally but have never had an ablation) but reading the above posts it seems possible that it can precipitate occurrences. As described it is usually short-lived and confined to one eye - and I just accept it as one of those things - like twitches or hiccups - that are part of life and can be endured, ignored or enjoyed.......

[Diddyd in reply to quanglewangle]

That’s interesting the a fib link. It was most curious and was not painful.

[Diddyd]

Brilliant. 🤞🏻It was a one off

[Snowgirl65]

I had an ocular migraine with my second ablation. The only other times I would get them, which was very infrequently, was if I ate too much dark chocolate or if I was tense and ground my teeth (bruxism). The oculars are painless, but frightening at first. Mine last exactly 20 minutes down to the second!

[Jajarunner]

I had this 9 days after ablation. I didn't know it was a migraine and called 111 who sent me to A&E urgently where I was treated marvellous and had heart and eyes checked, a carotid artery scan before being told it was unlikely to be a stroke but I was invited back the next day to have an urgent mri which showed no stroke or minestrone. Also no ateriovenous malformations in the brain, which I could be prone to, due a genetic disorder. So a good use of two days and chapeau to West suffolk hospital.

But, yes, they said a migraine even though it was nothing like my usual migraines. Still better safe than sorry if you are not sure.

[Diddyd in reply to Jajarunner]

Thank you for sharing your experience.

I am going to put it down to the procedure 🤞🏻

[BevCynfelyn]

I wake up with pretty kaleidoscope patterns almost every morning since beginning with persistent AF 5 years ago. I sit on the side of the bed waiting for my brain to interpret which of the 3 doorframes into the bathroom is the real one before I aim to get myself there! It's usually resolved within 10 min. I've been in NSR since my last cardioversion 2.5 years ago but have a severely left atrium and also have AFlutter. I'm on a fairly heavy package of medications to stave off the AF with the understanding that a return to full AF will result in a pace and ablate.

[Diddyd in reply to BevCynfelyn]

Wow, every day! As long as it’s not an indicator of needing medical intervention, it has been quite intriguing to experience. Had another one last night. However, if I had them everyday without warning I might not be so tolerant of them.

[BevCynfelyn in reply to Diddyd]

As it only really happens as I wake up, I just take more time getting vertical! It would worry me other times if the day tho

[Adalaide2020 in reply to Diddyd]

This is not related to af but I would suggest anyone having distorted vision to go to the optician. My vision in my left eye is permanently distorted due to a hole in my macular. It started off with flashing lights and wobbly lines . I have had it operated on twice but am left with distorted central vision. I was told it generally only happens to one eye. It's just a suggestion and opticians have so many clever toys at their disposal. I may be way off but thought it important enough to say. 🌻

[Diddyd in reply to Adalaide2020]

Thanks for your reply. The visual disturbance comes unannounced, lasts for 10-20 mins and then goes. I have not had one for a week now so as it is not a permanent/consistent problem I have ruled it out as an eye problem but am going to optician just to be in safe side.

[Adalaide2020 in reply to Diddyd]

Good call 🌻