Ablation Causes Ongoing Visual Migraine - Atrial Fibrillati...

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Ablation Causes Ongoing Visual Migraine

Brad43 profile image
22 Replies

I got my first and last ablation six days ago. Regarding AF, the outcome seems good so far. But somehow, I've ended up in a state of ongoing visual migraine. It's lasted since the day after the procedure, with 2 or 3 15-25 minute episodes per day and an ongoing background of colors and weird shapes and things popping up almost constantly. When I tried to go to sleep last night, it was like a light show keeping me awake for a long time. I googled this and found that in a tiny % of procedures where they punch a hole in the atrial wall (septum?), patients get episodes of visual migraine aura for a few days. But it sounded like it's never anywhere near as bad as mine. I haven't called my GP yet about it, I'm about to. I'll be seeing my EP who did the ablation in 2 days. Just wondering if anyone has had any experience with anything like this. Ongoing visual migraine is infinitely worse than the AF I was trying to deal with. At this point, I'm very, very sorry I got the ablation.

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Brad43 profile image
Brad43
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22 Replies

I can understand your disappointment Brad. Although I didn't experience this problem when I had my cryoablation, it is not unusual to experience migraines for a short time after an ablation. Most people who have posted in the past, say they reduce in intensity and eventually disappear so hopefully it will not be long before your situation improves then your understandable opinion about ablations will hopefully change.

CDreamer profile image
CDreamer

In all of ablation procedure for AF they punch a hole through the septum - I would have hoped this would have been explained to you? Migraine auras are very common after ablation and usually fade within a few weeks, once the hole has healed.

Having suffered migraines with auras all my life I found out why when I had my ablation - I already had a hole in atria septum, a PFO - about 20% of population have one without knowing about it. It did mean they didn’t need to phunch through. The link between PFO’s and migraines is well known. Interestingly, my migraines have decreased massively since the ablation - so very pleased.

It’s very early days and it does take a lot longer than you are told to recover from ablation. Have you read the AFA advice leaflet on recovery and what to expect? Available on the AFA website.

Brad43 profile image
Brad43 in reply toCDreamer

The septal puncture was not mentioned to me at all. When I had my first visual migraine after the procedure, I thought it from stress and there wouldn't be any more. Wrong!! Having 2 per day since then, along with the ongoing lights and other things. If I had known about this, I wouldn't have got the ablation.

Have a look at the factsheet "recovering from an ablation" on the AF Association webpage. Click on the "For Patients" header, then "patients resources", then factsheets and scroll down. Well worth a look!!

Brad43 profile image
Brad43 in reply to

Thanks. I was given nothing like this. I'm seeing my EP tomorrow, and will show it to her. Maybe I can convince her to show it, or something like it, to others considering ablation.

Styggy profile image
Styggy

I had my RF ablation last Wednesday and for the first couple of days I had them also.. They seemed to have stopped now though.

Brad43 profile image
Brad43 in reply toStyggy

It's been a week since I got mine, and there is no decrease in the visual migraine symptoms.

Brad43 profile image
Brad43

Many thanks to all of you for your replies. It has been very informative and helpful. It's comforting to know it's a common occurrence, and not just me, but I'm still concerned because it's such a bad case of it. I'm afraid it might not go away entirely, and I'll be left with permanent vision problems. I guess I'll know in a few days or weeks.

CDreamer profile image
CDreamer in reply toBrad43

It’s always worth having these things checked out - let us know how you get on.

mikeymike7 profile image
mikeymike7

I had all the colours, shapes and flashes straight after my cryoablation and it was quite a different experience from my usual migraines which involve a black and white, curved, flashing zigzag pattern. The colours and shapes stuff slowly lost their intensity and frequency over a few weeks and I have never had them since.

Brad43 profile image
Brad43 in reply tomikeymike7

I've never had migraine headaches, but had the aura 7 or 8 times in the last 25 years. The episodes I'm having now are about the same as they were before, but maybe the most distressing part is the ongoing stuff that never goes away. I can only hope it will all decrease in the next few weeks. No sign of it yet.

Bob56 profile image
Bob56

Hi I can t comment on the severity of what you are going through, but I too was very worried for the first couple of weeks post ablation due to the aural migraine problem. I had episodes every day, lasting around 20/30 minutes each time. It always went away, but came back of its own accord without warning. My local optician did put my mind at rest, to a degree, but those first couple of weeks were pretty awful. However, the problem did subside and whilst I still had the odd episode for a month or more, the interference eventually disappeared completely. I think the overall recovery process from ablation was several months in my case, with aural migraines only one of the side effects. For a while I was very unsure I had done the right thing but I did get better and better as time went on and I have no regrets now.

BobD profile image
BobDVolunteer

Such a shame hospitals do not give out our patient guide on recovery as all this is fully explained and lots more. Seems many doctors are actually ignorant of this.

One of my daughters had this for weeks, due to extreme stress. I hope it clears up soon!

Quilafizz profile image
Quilafizz

Hi Brad!

Yes, I had the exact same problem as you and it took 3 weeks to calm down. This will not permanently affect your vision. The visual effects you are experiencing are called scintillating scotomas- please look it up. I also had random numbness to the left side of my face and hand, but was worked up for a stroke-negative again.

I am an ER doctor and the scotomas would get so bad that I couldn’t read the monitors over the patient’s bed. All I could see was a flashing ’worm’ in both eyes. My EP was useless, telling me to ‘ride it out’. Please. Since these are all of the same symptoms as severe migraine with aura,I prescribed myself Rizotriptan (Maxalt) and wallah! Symptoms gone for 4-6 hour with each dose. After the 3 week period, I had a few more episodes here and there, but would Medicate and no more episodes.

The scotomas should go away within the first few weeks. If your head is still throbbing by week 4, ask to have a transeptal patch placed in your atrial wall. Your symptoms are caused by the hole- sometimes 2 holes, (not little puncture marke) they create when they are pushing the cryoballoon from the right atrium to the left,

It leaves you with a nice sized hole in the wall of your heart that can take up to 9 months to heal,but generally heals within the first month.

The significance of the hole is that instead of you exhaling off CO2 (Carbon Dioxide), you retain some of it as it gets shunted through the hole in your septum’s and back out into your system. This, you have the symptoms of CO2 poisoning, albeit lightly.

As the hole in youratrial wall decreases in size, so will your symptoms. My advice I’d to try the meds for7-10 days, then reevaluate where you are.

Happy worm hunting🤣🤣🤣

Brad43 profile image
Brad43 in reply toQuilafizz

Thanks for the more detailed description. After the procedure, my EP told my son that she had had some trouble making the puncture, because of the shape or thickness of it or something like that. Maybe it's not coincidence that she had that trouble with it, and now my aura is so bad. Maybe she ended up making a very big hole, so more CO2 gets through. I'll be seeing her tomorrow for follow-up, so I'll mention the Rizotriptan to her. Hopefully she'll prescribe some and I can see if it helps.

CDreamer profile image
CDreamer in reply toQuilafizz

Thank you so much taking the time to explain, I for one appreciate, learn and am reassured when I understand.🙂

Mazza23 profile image
Mazza23

Still having them after 2years just aura no pain

Brad43 profile image
Brad43 in reply toMazza23

This is exactly what I'm afraid of. I don't want to trade AF for vision problems. I never would have done it if I'd known that was a possibility. Worse yet, I don't even know if the procedure was successful regarding the AF.

Mazza23 profile image
Mazza23 in reply toBrad43

Still think it was worth it to be in nsr I can put up with the aura as long as no pain

F-M-C-MM profile image
F-M-C-MM

Hi Brad43, I concur with all of the above, you have to sit it out and wait for the hole to close over. I waited for 6 months, after experiencing frequent episodes all lasting 20 minutes. I didn't experience the colours, only the scintillating scotoma. It is worrying when it first occurs, and it's a good idea to be checked by an eye specialist. I was quite concerned when it first occurred as I had a retinal detachment a couple of years previously. I had laser treatment to prevent it spreading, and the doctor warned me if I ever again experienced flashing lights effect I should immediately be seen by an ophthalmologist. Hence my alarm at the presence of visual disturbances following the ablation. So it's not advisable to self diagnose and link such occurrences to an ablation only. Brad did you have a cryoablation or a radiofrequency one? With any luck it should go away in time.

Brad43 profile image
Brad43

I had a cryoablation. I'll be getting a complete eye exam soon. I had one scheduled for last week, but postponed it after having this aura problem. I don't have any other eye problems, the aura is definitely a result of the ablation. It's 7pm, and I haven't had any of the aura episodes yet today, this is the first day without one so far. I'm hoping that's a good sign. But I'm still having problems of frequent brightening and darkening of what I'm looking at, and an oval-shaped area to the extreme right of my field of view that appears to be rotating or moving in some fashion. So it's still a big problem. I talked to my EP about the aura, and she seemed oblivious to the whole thing, like she never heard of it. Surprising, since she does so many ablations.

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