Stroke and PFO

Hi. I had a stroke in July 2021. In the run up I suffered with headaches and lots of migrains with aura. Since the stroke I’ve had no visual disturbances or migraine. I’m on Clopidogrel and this must help, but I’ve recently been told that I have a a PFO (hole in the heart) and this was the likely cause of my stroke. Having researched PFO the main symptoms are dizzyness, headaches, migraine with aura and breathlessness - all of which I’ve had since my teenage years. I was thinking that anyone who doesn’t know what the cause of their stroke was and who has/is experiencing headaches could maybe ask their doctor to check for PFO. I had a painless echocardiogram with bubble test to confirm I had a PFO. The results were then referred to a cardiologist who has confirmed closure is the best course of action. Having a diagnosis has really helped my mental health, as I’m sure I’m not alone in worrying about having another stroke.
It’s been challenging post stroke, especially as I assumed the fatigue would soon reduce (it still hasn’t!). I’m lucky that my work have been supportive and I’ve just started a shallow rehab.
I’m new to this (brilliant) forum, so I hope I’ve added this message in the right place?! I’ve not posted before, but reading about other people’s experiences has really helped me and it has ensured that I haven’t felt so alone, especially as I’m considered ‘young’ for having a stroke. Thank you to everyone who had posted on this forum and thanks for reading my story.

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Lisa thanks for sharing. Stroke due to a hole in the heart is not uncommon. With most of us, fatigue is on going. Just rest when your body tells you, but try not to over rest as that might disturb your sleep at night. Good luck with your onward journey.

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Hello @LisaQB, do you know what type of stroke you had? I had a bilateral multifocal cerebellar stroke in September 2021. I did have an echocardiogram with bubble study, but the PFO had closed over. We all have this little hole in the heart when we are born, but for most it closes over, for others it doesn’t close over (about 30%), and for most them that doesn’t prove a problem, but for some, the left-right heart shunt can send clots back into the bloodstream causing unwanted results. I think fatigue stays around for quite some time, even a minor TIA can cause as much neuro-fatigue as a major stroke, it is not discerning, nor discriminating. I was 44 when I had the stroke, and yes, people do say “you are too young to have a stroke”, but the the reality is you can have a stroke at any age, even in the womb, so people have been very much misguided by this. I tend to answer back, “I thought, I’d get mine out of the way so I can look after all you lot.” My sense of acerbic wit. We have some survivors on here not out of their teens. It would be nice for the media to make people more aware of this, but alas, they sell units by platitudes and bumper sticker logic. I hope you are recovering at a decent pace, neuro-plasticity will be slowing down for you now that you’ve reached the six month mark, it’s important still to not get over-fatigued, and avoid the boom bust cycle. The brain is still repairing. Have a lovely Christmas, and thank you for sharing.

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Dear Lisa

Well done for making logical and positive steps since a stroke bit you.
All who had strokes during this never ending pandemic have extra sympathy.
I had migraines for sixty years. Then put on to Clopidogrel and migraines reduced to just one in say three months. I have tested out clopiwhatzjt by trialling low dose aspirin for five weeks. Definite that Clopidogrel reduces migraine for me. And does not have other side effects.

The medics could not indicate any reason for my suffering a stroke. I don’t see any merit in trying to find out.
Four years after stroke I had major heart surgery , but the cause was not linked to a stroke.

Yes you have posted in an appropriate place.
And can I please give you a gold star for describing it as a stroke and not my stroke.

Regret to confirm that the fatigue, which I call SF, is likely to drag on. If you try not to fight it then it may well drift away.
It took me months to grasp that there was no merit in trying to relate to the stroke. I much prefer the fact that stroking lasts for just a few hours. It’s gone, finished and now I have to clean up the damage.

Besides, we each have unique maps of which bit of the brain carries out which function, so stroke will never be the same for any two persons. At least we are all unique !

I am pleased you have found the forum brilliant. You are the first user to have commented favourably.

Stay positive
Smile then smile again
Lots of us are out hear cheering you on

Colin

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Inspirational post LisaQB.
Your experience mirrors my own in 2009 at the age of 63.
When they looked for the source of the stroke they diagnosed a PFO as the likely cause and it was closed in a small operation using a catheter.
I also am on Clopidogrel which has the benefit of improving blood circulation to my legs .
I had a difficult first year but have gradually adapted to some minor balance and fatigue issues and overcome them.
Alas my eyesight was permanently damaged so no more driving but I manage to access everything with public transport .
Good luck with your journey

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Hi Colin Have enjoyed your wise & uplifting posts. Think every one of us has a positive story to tell that will help others who have been stroked as you put it.I know the advancing New Year will brings improvements to us all. Pds

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@LisaQB and @Rups

Thank you for your your posts. May 2021 was when stroke affected me, exactly as yours in that PFO is the most likely cause. Fortunately fairly mild and recovery going well.

After all of the tests, the bubble scan revealed the PFO and a follow-up Transoesophageal Echocardiogram (TOE) gave the consultants better visibility of it. I am, apparently a good candidate for closure of PFO, so am on a list for that procedure in some time in the new year. In the mean time regular rehab, walks, staged return to work is where I am at.

It’s great to read our stories and understand how different we all are, just knowing that takes away some of the loneliness.

Best wishes

Phil

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A great post Lisa and interesting to read so many stories that tell a similar tale and one that is familiar to me.
At 52 - having lived with migraines (with aura) for as long as i can remember they increased in frequency for a few months before I had the first stroke followed by a second 10 days later. That was 4 years ago - I have been very lucky and fortunate in so many ways. Four years on after a lot of work and patience I am active and able, after a long wait I did qualify for a PFO closure - but I still get the migraines (Ahhh!). I did loose my left side peripheral vision so can no longer drive,however, I am able to work around it and it has not stopped me - things taking a little longer sometimes but that is no bad thing and I can still do them. There is hope and a lot of life to be lived.

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Hi @JDD64 welcome to the community. I’m pleased to hear you are now doing well.

Unfortunately for me they don’t know what caused the clot that caused the stroke for me.

I used to suffer migraines with aura and haven’t had one for years till a few weeks back. I panicked a little as there is a school of thought that migraines are caused by unusual brain activity and, as you can imagine, having unusual brain activity after a stroke had me anxious that something was wrong.

Wishing you all the best for a healthy future :slightly_smiling_face:

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Lisa, just read your story and I hope you’re recovery is going well. I had a stroke 2 years ago and consequently found out it was due to a PFO.
The mental side of the recovery has been the greatest and I still struggle with this and I can certainly empathise with your story.
I’ve been offered the operation to close the PFO and I’m very undecided on whether to have it… which may seem strange but I’ve recovered and my fitness goes from strength to strength so why tinker!!!
I hope you’re recovery is going well and I know how hard it is to mentally as well as physically recover. I’m keen to see if you’ve been accepted for the PFO operation and if so what your thoughts and approach has been.
Once again I’m sorry to hear your story and my best wishes on your recovery…Take care and stay positive…

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IV just been given a date for my PFO closure. And am waiting for the phone Pre-Op call sometime next week. I’m going ahead with mine, I have no other lifestyle changes to make and this should be the removal of any likely repeat of cause from that source plus removal of potential future issues from the PFO.

Just a bit apprehensive at the thought of it right now but on balance think it’s the right choice for me

I’m glad your recovery is going well.
While the decision to go ahead with a PFO closure is a personal one, from my experience it was the right decision. The closure was recommended by a panel health professionals who had reviewed my echocardiogram with bubble. After speaking with an absolutely excellent cardiologist who answered all of my questions and concerns I made the decision to go ahead with the procedure. The closure was successfully done on 15th Feb this year. There are associated risks with any procedure under general anaesthetic, and with a PFO closure there can be serious albeit not commonly occurring risks, but the closure reduces risk of another stroke by 50-70% and this was a deciding factor for me.
I was lucky to have the procedure done by an excellent team and I felt reassured and in good hands throughout, and my three week follow up appointment showed the procedure had gone completely as expected. The peace of mind that my stroke risk is reduced has made a huge difference to my mental health.
The procedure and recovery were actually not too bad as it’s fairly straightforward. I was really surprised at my speedy recovery.
Personally in my case and in my experience going ahead with the closure was absolutely the right thing to do.
I wish you all the very best. :relaxed:

Hi. I made the decision to go ahead with a PFO closure after the stroke I had last year. The recommendation in my case was for closure and I was incredibly lucky to have an excellent cardiologist who completely supported and reassured me every step of the way.
I was of course really apprehensive (it’s a heart procedure afterall!), however I can assure you that the procedure is not at all invasive and honestly I was in no pain or even much discomfort post procedure (don’t tell my husband as I milked it for all it was worth and I did insist on lots of ice cream as the procedure requires a TOE!), but even my throat wasn’t particularly sore afterwards. I have a very tiny scar on my groin, but even that wasn’t painful at the time. The worst thing was having to rest as I’m not great at taking it easy!
For me the peace of mind that the PFO closure gave me by reducing my stroke risk was priceless. I’m so glad I was able to have the closure done relatively soon after the stroke.
I’d like to reassure you by my experience and I wish you all the very best.

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Talk about inspirational; you seem so positive despite the challenges, thank you for sharing. Wishing you all the best and good luck on your journey too.

Thank you @LisaQB

I’ve been referred to Bart’s for the procedure. Team seem really good there. My understanding at the moment is mine will be local anaesthetic for the leg/groin and sedation avoids the need for general anaesthetic. Have pre op call next week and procedure later in the month.

I had a bubble scan then TOE locally for further investigation in Colchester when they were testing for the likely city source as all other scan were clear, and I was referred on from that.

So here I am, in my bed in Bart’s having just had the PFO closure. All gone well and hoping to be home later today, care has been first class and very clearly explained. Added bonus for me is my bed has a view of St Paul’s :blush:

Once recovered it’s gradually getting back to the activities I really enjoy, cycling and walking, just little trips and short distance
, getting back my fitness.

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Wishing you all the best for a speedy recovery @EssexPhil, take care

Wishing you a speedy recovery.

Good to hear @EssexPhil, wishing you a spirited return to your health and fitness.

Thank you all. Got home at 7:30 pm. All done and now on the road to recovery.

I actually had general anaesthetic as it was decided to use TOE ultrasound (camera in the throat) to help guide the catheter/device in to place. This is in addition active X-Ray during procedure. In my case this is where I have more recoevery to do - I always get mouth ulcers with this type of thing which have come up, no big deal I’ve been susceptible to them my whole life!

The leg incision is healing nicely, I have a lovely rainbow effect bruise showing but that is already fading out.

Can feel nothing of the device in any way, the closure is an instant result and means this “mechanism of injury” is now removed completely.

On balance, this has been the right thing for me. It’s very low risk and the benefits will be life long.