PFO (hole in the heart)

Hi,

I‘ve recently found out that I have a PFO (a hole in the heart) and my cardiologist is liaising with some other consultants to try and decide if they should operate on it if it could potentially help my vestibular migraines and essentially my MAV. I should add that I also have atrial fibrillation which is apparently not that common at my age, although I’m not sure if the surgery would help that or not.

I just wondered if anyone had any experience of a PFO closure helping or not? I did look for previous posts on this but the last one I found was from 2018 and a lot can happen in five years so I thought I’d post as the medical profession seems unclear on whether a PFO closure can help with migraine or not.

Thanks everyone!

Sarah

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I think the community was pretty unambiguously dismissive of PFOs’ role in migraine until relatively recently (like within the past 1 or 2 years). I can’t remember exactly, but I think some new research came out that re-suggested a potential role

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Thanks for your message. I guess I have to just be patient and wait and see what the consultants say. Thanks again!

What kind of imaging showed this?

A bubble contrast echocardiogram

Do you have vestibular symptoms?

Yes, I have 24/7 dizziness and a feeling of imbalance and I get blurred vision sometimes reading or looking at a computer (and I’ve had my eyes tested and they’re fine). I have a load of other symptoms too but won’t bore you with them!

You wouldnt bore me at all! Please let me know what you experience on a daily basis?

How long have you been dealing with this for?

That’s interesting Sarah I have Atrial Fib and a Right bundle branch block haven’t had an echo cardio yet but due soon also have vestibular symptoms.Doc said mine was hereditary as my father has the same Iam in my late forties…

Sorry for the delayed reply. I’ve been having a bit of a rough time.

It started with intermittent relatively mild dizziness for about 4 months at the end of 2020 but all MRIs etc were clear and it actually disappeared and I lived a blissful dizzy-free life in 2021! Then on the 1st January 2022 I began having problems with my ears - happy new year indeed! Initially they were just blocked, but again a trip to ENT showed nothing was wrong, and although the blocked feeling disappeared the constant tinnitus began and has remained until today. In April last year the dizziness came back, along with tingling in my head and my feet and I was diagnosed with TMJ as I also had an incredibly painful jaw and could barely open my mouth. I undertook treatment for the TMJ and although I still have the pain it is much more mild now and I can live with it without having to rely on painkillers but the dizziness and tingling worsened and both are now 24/7 along with the tinnitus. It was in September that I was diagnosed with vestibular migraine.

I then also have the hole in my heart and atrial fibrillation.

It’s so debilitating and life is really hard but I won’t say too much about that as I don’t want to get upset. I was dizzy in 2020 though (albeit on a milder scale) and it disappeared so I have to hope that eventually this will do the same if I can finally hit on the right treatment along with the diet and supplements etc!

I’ve tried to summarise it without going into too much detail but hopefully that gives you an idea :slight_smile:

I had to google a bundle branch block as I’d never heard of it before! Is that what causes your AF or is it unrelated?

I’m booked in to see my cardiologist in a few weeks time about next steps. I’m 40 by the way.

Hi

I don’t know if RBB has an effect as you know medical professionals don’t seem to know much about it and certainly hesitate to be drawn on anything they just throw pills at you and hope it works ,one of these amitriptyline certainly didn’t and brought on or added to horrible depression and anxiety
which lasted about 2 years. They’re still looking into the Afib and I have high blood pressure also who knows if it effects the Vestibular M is affected by this.